Individually rare, collectively as common as Childhood Cancer - but no one knows it exists. We wanted to shine a light on some of the brave, beautiful children with dementia, and the heartbreaking conditions they are battling. Over 50,000 babies are born with one of the 145 different genetic conditions that cause Childhood Dementia every year. All of these conditions are terminal, taking a life every 11 minutes, with an average life expectancy of just 10 years old. Childhood Dementia is progressive. Children are often born apparently healthy then over time lose the ability to walk, talk, run, play, eat, drink & eventually their lives. It’s cruel, relentless & devastating. There are no approved treatments for many Childhood Dementia-causing conditions anywhere in the world & over half have no active clinical trials. We are fighting to change that, and together we can save these brave, beautiful children… 🤍 Sadie, Sanfilippo Type A, @Sadie & Fam 🤍 Henry, Hunter 🤍 Remi, Rett 🤍 Lottie, Sanfilippo Type A & Down Syndrome 🤍 Liam, Niemann Pick Type C 🤍 Grant & Hazel, MCAHS1, @Hazel Mae-Medical 🤍 Liv, Sanfilippo Type B, @Saving Liv 🤍 Charli, Batten 🤍 Poppy & Oliver, Sanfilippo Type B, @Cure Poppy + Oliver 💜 🤍 Benjamin, Hunter 🤍 Veda, Sanfilippo Type A, @Saving Veda 🤍 Cody, Sanfilippo Type A, @codys_fight 🤍 Nellie, MLD 🤍 Clark, Sanfilippo Type A, @Cloey | Sanfilippo Mama 💜 🤍 Sophia, Sanfilippo Type A 🤍 Bertie, BPAN, @Bertie’sBpanJourney💙 🤍 Scarlett, BPAN, @Scarletts BPAN Battle 💗 🤍 Emilia, Sanfilippo Type A 🤍 Elle, Sanfilippo Type C, @Team Elle 🤍 Nikolai, Hunter 🤍 Julek, INAD 🤍 Merrick, Sanfilippo Type A, @Hope for Merrick 🤍 Noah, Niemann Pick Type C Please, please share 🙏🏻 #dementia #dementiaawareness #raredisease #specialneedskids #specialneedsparenting

Before Leni was diagnosed, we didn’t know that children could get dementia either or the catastrophic impact of this diagnosis - both for the child and the people that love them. The more people understand childhood dementia, the more awareness we can bring - and awareness is absolutely vital if these beautiful kids are ever going to get access to the treatment that they desperately need. #girlmom #mumanddaughter #medicalmom #dementia #toddlertok

One year since Sanfilippo changed our world. One year of learning to live with the unimaginable. One year of relentlessly fighting for our little Leni. One year of loving her more than words could ever explain 💛 Today marks one year since Leni was diagnosed with Sanfilippo Syndrome, a form of Childhood Dementia. The day that our lives were split in two - before Leni’s diagnosis, and after. Everything we had imagined for Leni and our family was ripped away in one phone call, and suddenly the future seemed terrifying. Overnight we crashed into this world we didn’t know existed, navigating unknowns we never expected. The last 12 months have been brutal. Our hearts have been repeatedly shattered into millions of pieces. The grief and devastation is often overwhelming. The appointments, the waiting, the worrying, and the heartbreak. At times we don’t know how we are going to survive this. But the last 12 months have also forced us to live in the moment and shown us just how beautiful people can be. We’ve found strength we never knew we had, and discovered that joy and heartbreak can exist side by side. We’ve met incredible people, raise a huge amount of awareness and almost £450,000, and learned to appreciate the little things in a much bigger way. We still don’t know what Leni’s future looks like, and we are still terrified. But there is real hope. Hope for treatments and hope for a different future for Leni. We will keep learning, keep fighting, keep raising awareness and keep doing everything we can for our sweet little girl. One year on, we are totally different people. We carry more knowledge, more fear, more heartbreak, more determination, and an even deeper appreciation for the time we have together. Today is a huge mix of emotions, but mainly we feel pride. Pride in what we have achieved over the last 12 months, pride in managing to survive the unsurvivable, and so much pride for Leni. Being her parents is the greatest privilege of our lives, and despite everything we would choose this life over and over again if it meant we get to have Leni 💛 #sanfilippo #dementiaawareness #toddlertok #sendparents #mumanddaughter

Individually rare, collectively as common as Childhood Cancer - but no one knows it exists. We wanted to shine a light on some of the brave, beautiful children with dementia, and the heartbreaking conditions they are battling. Over 50,000 babies are born with one of the 145 different genetic conditions that cause Childhood Dementia every year. All of these conditions are terminal, taking a life every 11 minutes, with an average life expectancy of just 10 years old. Childhood Dementia is progressive. Children are often born apparently healthy then over time lose the ability to walk, talk, run, play, eat, drink & eventually their lives. It’s cruel, relentless & devastating. There are no approved treatments for many Childhood Dementia-causing conditions anywhere in the world & over half have no active clinical trials. We are fighting to change that, and together we can save these brave, beautiful children… 🤍 Sadie, Sanfilippo Type A, @Sadie & Fam 🤍 Henry, Hunter 🤍 Remi, Rett 🤍 Lottie, Sanfilippo Type A & Down Syndrome 🤍 Liam, Niemann Pick Type C 🤍 Grant & Hazel, MCAHS1, @Hazel Mae-Medical 🤍 Liv, Sanfilippo Type B, @Saving Liv 🤍 Charli, Batten 🤍 Poppy & Oliver, Sanfilippo Type B, @Cure Poppy + Oliver 💜 🤍 Benjamin, Hunter 🤍 Veda, Sanfilippo Type A, @Saving Veda 🤍 Cody, Sanfilippo Type A, @codys_fight 🤍 Nellie, MLD 🤍 Clark, Sanfilippo Type A, @Cloey | Sanfilippo Mama 💜 🤍 Sophia, Sanfilippo Type A 🤍 Bertie, BPAN, @Bertie’sBpanJourney💙 🤍 Scarlett, BPAN, @Scarletts BPAN Battle 💗 🤍 Emilia, Sanfilippo Type A 🤍 Elle, Sanfilippo Type C, @Team Elle 🤍 Nikolai, Hunter 🤍 Julek, INAD 🤍 Merrick, Sanfilippo Type A, @Hope for Merrick 🤍 Noah, Niemann Pick Type C Please, please share 🙏🏻 #dementia #dementiaawareness #raredisease #specialneedskids #specialneedsparenting

Before Leni was diagnosed, we didn’t know that children could get dementia either or the catastrophic impact of this diagnosis - both for the child and the people that love them. The more people understand childhood dementia, the more awareness we can bring - and awareness is absolutely vital if these beautiful kids are ever going to get access to the treatment that they desperately need. #girlmom #mumanddaughter #medicalmom #dementia #toddlertok

One year since Sanfilippo changed our world. One year of learning to live with the unimaginable. One year of relentlessly fighting for our little Leni. One year of loving her more than words could ever explain 💛 Today marks one year since Leni was diagnosed with Sanfilippo Syndrome, a form of Childhood Dementia. The day that our lives were split in two - before Leni’s diagnosis, and after. Everything we had imagined for Leni and our family was ripped away in one phone call, and suddenly the future seemed terrifying. Overnight we crashed into this world we didn’t know existed, navigating unknowns we never expected. The last 12 months have been brutal. Our hearts have been repeatedly shattered into millions of pieces. The grief and devastation is often overwhelming. The appointments, the waiting, the worrying, and the heartbreak. At times we don’t know how we are going to survive this. But the last 12 months have also forced us to live in the moment and shown us just how beautiful people can be. We’ve found strength we never knew we had, and discovered that joy and heartbreak can exist side by side. We’ve met incredible people, raise a huge amount of awareness and almost £450,000, and learned to appreciate the little things in a much bigger way. We still don’t know what Leni’s future looks like, and we are still terrified. But there is real hope. Hope for treatments and hope for a different future for Leni. We will keep learning, keep fighting, keep raising awareness and keep doing everything we can for our sweet little girl. One year on, we are totally different people. We carry more knowledge, more fear, more heartbreak, more determination, and an even deeper appreciation for the time we have together. Today is a huge mix of emotions, but mainly we feel pride. Pride in what we have achieved over the last 12 months, pride in managing to survive the unsurvivable, and so much pride for Leni. Being her parents is the greatest privilege of our lives, and despite everything we would choose this life over and over again if it meant we get to have Leni 💛 #sanfilippo #dementiaawareness #toddlertok #sendparents #mumanddaughter

Individually rare, collectively as common as Childhood Cancer - but no one knows it exists. We wanted to shine a light on some of the brave, beautiful children with dementia, and the heartbreaking conditions they are battling. Over 50,000 babies are born with one of the 145 different genetic conditions that cause Childhood Dementia every year. All of these conditions are terminal, taking a life every 11 minutes, with an average life expectancy of just 10 years old. Childhood Dementia is progressive. Children are often born apparently healthy then over time lose the ability to walk, talk, run, play, eat, drink & eventually their lives. It’s cruel, relentless & devastating. There are no approved treatments for many Childhood Dementia-causing conditions anywhere in the world & over half have no active clinical trials. We are fighting to change that, and together we can save these brave, beautiful children… 🤍 Sadie, Sanfilippo Type A, @Sadie & Fam 🤍 Henry, Hunter 🤍 Remi, Rett 🤍 Lottie, Sanfilippo Type A & Down Syndrome 🤍 Liam, Niemann Pick Type C 🤍 Grant & Hazel, MCAHS1, @Hazel Mae-Medical 🤍 Liv, Sanfilippo Type B, @Saving Liv 🤍 Charli, Batten 🤍 Poppy & Oliver, Sanfilippo Type B, @Cure Poppy + Oliver 💜 🤍 Benjamin, Hunter 🤍 Veda, Sanfilippo Type A, @Saving Veda 🤍 Cody, Sanfilippo Type A, @codys_fight 🤍 Nellie, MLD 🤍 Clark, Sanfilippo Type A, @Cloey | Sanfilippo Mama 💜 🤍 Sophia, Sanfilippo Type A 🤍 Bertie, BPAN, @Bertie’sBpanJourney💙 🤍 Scarlett, BPAN, @Scarletts BPAN Battle 💗 🤍 Emilia, Sanfilippo Type A 🤍 Elle, Sanfilippo Type C, @Team Elle 🤍 Nikolai, Hunter 🤍 Julek, INAD 🤍 Merrick, Sanfilippo Type A, @Hope for Merrick 🤍 Noah, Niemann Pick Type C Please, please share 🙏🏻 #dementia #dementiaawareness #raredisease #specialneedskids #specialneedsparenting

Before Leni was diagnosed, we didn’t know that children could get dementia either or the catastrophic impact of this diagnosis - both for the child and the people that love them. The more people understand childhood dementia, the more awareness we can bring - and awareness is absolutely vital if these beautiful kids are ever going to get access to the treatment that they desperately need. #girlmom #mumanddaughter #medicalmom #dementia #toddlertok

One year since Sanfilippo changed our world. One year of learning to live with the unimaginable. One year of relentlessly fighting for our little Leni. One year of loving her more than words could ever explain 💛 Today marks one year since Leni was diagnosed with Sanfilippo Syndrome, a form of Childhood Dementia. The day that our lives were split in two - before Leni’s diagnosis, and after. Everything we had imagined for Leni and our family was ripped away in one phone call, and suddenly the future seemed terrifying. Overnight we crashed into this world we didn’t know existed, navigating unknowns we never expected. The last 12 months have been brutal. Our hearts have been repeatedly shattered into millions of pieces. The grief and devastation is often overwhelming. The appointments, the waiting, the worrying, and the heartbreak. At times we don’t know how we are going to survive this. But the last 12 months have also forced us to live in the moment and shown us just how beautiful people can be. We’ve found strength we never knew we had, and discovered that joy and heartbreak can exist side by side. We’ve met incredible people, raise a huge amount of awareness and almost £450,000, and learned to appreciate the little things in a much bigger way. We still don’t know what Leni’s future looks like, and we are still terrified. But there is real hope. Hope for treatments and hope for a different future for Leni. We will keep learning, keep fighting, keep raising awareness and keep doing everything we can for our sweet little girl. One year on, we are totally different people. We carry more knowledge, more fear, more heartbreak, more determination, and an even deeper appreciation for the time we have together. Today is a huge mix of emotions, but mainly we feel pride. Pride in what we have achieved over the last 12 months, pride in managing to survive the unsurvivable, and so much pride for Leni. Being her parents is the greatest privilege of our lives, and despite everything we would choose this life over and over again if it meant we get to have Leni 💛 #sanfilippo #dementiaawareness #toddlertok #sendparents #mumanddaughter

Individually rare, collectively as common as Childhood Cancer - but no one knows it exists. We wanted to shine a light on some of the brave, beautiful children with dementia, and the heartbreaking conditions they are battling. Over 50,000 babies are born with one of the 145 different genetic conditions that cause Childhood Dementia every year. All of these conditions are terminal, taking a life every 11 minutes, with an average life expectancy of just 10 years old. Childhood Dementia is progressive. Children are often born apparently healthy then over time lose the ability to walk, talk, run, play, eat, drink & eventually their lives. It’s cruel, relentless & devastating. There are no approved treatments for many Childhood Dementia-causing conditions anywhere in the world & over half have no active clinical trials. We are fighting to change that, and together we can save these brave, beautiful children… 🤍 Sadie, Sanfilippo Type A, @Sadie & Fam 🤍 Henry, Hunter 🤍 Remi, Rett 🤍 Lottie, Sanfilippo Type A & Down Syndrome 🤍 Liam, Niemann Pick Type C 🤍 Grant & Hazel, MCAHS1, @Hazel Mae-Medical 🤍 Liv, Sanfilippo Type B, @Saving Liv 🤍 Charli, Batten 🤍 Poppy & Oliver, Sanfilippo Type B, @Cure Poppy + Oliver 💜 🤍 Benjamin, Hunter 🤍 Veda, Sanfilippo Type A, @Saving Veda 🤍 Cody, Sanfilippo Type A, @codys_fight 🤍 Nellie, MLD 🤍 Clark, Sanfilippo Type A, @Cloey | Sanfilippo Mama 💜 🤍 Sophia, Sanfilippo Type A 🤍 Bertie, BPAN, @Bertie’sBpanJourney💙 🤍 Scarlett, BPAN, @Scarletts BPAN Battle 💗 🤍 Emilia, Sanfilippo Type A 🤍 Elle, Sanfilippo Type C, @Team Elle 🤍 Nikolai, Hunter 🤍 Julek, INAD 🤍 Merrick, Sanfilippo Type A, @Hope for Merrick 🤍 Noah, Niemann Pick Type C Please, please share 🙏🏻 #dementia #dementiaawareness #raredisease #specialneedskids #specialneedsparenting

Before Leni was diagnosed, we didn’t know that children could get dementia either or the catastrophic impact of this diagnosis - both for the child and the people that love them. The more people understand childhood dementia, the more awareness we can bring - and awareness is absolutely vital if these beautiful kids are ever going to get access to the treatment that they desperately need. #girlmom #mumanddaughter #medicalmom #dementia #toddlertok

One year since Sanfilippo changed our world. One year of learning to live with the unimaginable. One year of relentlessly fighting for our little Leni. One year of loving her more than words could ever explain 💛 Today marks one year since Leni was diagnosed with Sanfilippo Syndrome, a form of Childhood Dementia. The day that our lives were split in two - before Leni’s diagnosis, and after. Everything we had imagined for Leni and our family was ripped away in one phone call, and suddenly the future seemed terrifying. Overnight we crashed into this world we didn’t know existed, navigating unknowns we never expected. The last 12 months have been brutal. Our hearts have been repeatedly shattered into millions of pieces. The grief and devastation is often overwhelming. The appointments, the waiting, the worrying, and the heartbreak. At times we don’t know how we are going to survive this. But the last 12 months have also forced us to live in the moment and shown us just how beautiful people can be. We’ve found strength we never knew we had, and discovered that joy and heartbreak can exist side by side. We’ve met incredible people, raise a huge amount of awareness and almost £450,000, and learned to appreciate the little things in a much bigger way. We still don’t know what Leni’s future looks like, and we are still terrified. But there is real hope. Hope for treatments and hope for a different future for Leni. We will keep learning, keep fighting, keep raising awareness and keep doing everything we can for our sweet little girl. One year on, we are totally different people. We carry more knowledge, more fear, more heartbreak, more determination, and an even deeper appreciation for the time we have together. Today is a huge mix of emotions, but mainly we feel pride. Pride in what we have achieved over the last 12 months, pride in managing to survive the unsurvivable, and so much pride for Leni. Being her parents is the greatest privilege of our lives, and despite everything we would choose this life over and over again if it meant we get to have Leni 💛 #sanfilippo #dementiaawareness #toddlertok #sendparents #mumanddaughter

Individually rare, collectively as common as Childhood Cancer - but no one knows it exists. We wanted to shine a light on some of the brave, beautiful children with dementia, and the heartbreaking conditions they are battling. Over 50,000 babies are born with one of the 145 different genetic conditions that cause Childhood Dementia every year. All of these conditions are terminal, taking a life every 11 minutes, with an average life expectancy of just 10 years old. Childhood Dementia is progressive. Children are often born apparently healthy then over time lose the ability to walk, talk, run, play, eat, drink & eventually their lives. It’s cruel, relentless & devastating. There are no approved treatments for many Childhood Dementia-causing conditions anywhere in the world & over half have no active clinical trials. We are fighting to change that, and together we can save these brave, beautiful children… 🤍 Sadie, Sanfilippo Type A, @Sadie & Fam 🤍 Henry, Hunter 🤍 Remi, Rett 🤍 Lottie, Sanfilippo Type A & Down Syndrome 🤍 Liam, Niemann Pick Type C 🤍 Grant & Hazel, MCAHS1, @Hazel Mae-Medical 🤍 Liv, Sanfilippo Type B, @Saving Liv 🤍 Charli, Batten 🤍 Poppy & Oliver, Sanfilippo Type B, @Cure Poppy + Oliver 💜 🤍 Benjamin, Hunter 🤍 Veda, Sanfilippo Type A, @Saving Veda 🤍 Cody, Sanfilippo Type A, @codys_fight 🤍 Nellie, MLD 🤍 Clark, Sanfilippo Type A, @Cloey | Sanfilippo Mama 💜 🤍 Sophia, Sanfilippo Type A 🤍 Bertie, BPAN, @Bertie’sBpanJourney💙 🤍 Scarlett, BPAN, @Scarletts BPAN Battle 💗 🤍 Emilia, Sanfilippo Type A 🤍 Elle, Sanfilippo Type C, @Team Elle 🤍 Nikolai, Hunter 🤍 Julek, INAD 🤍 Merrick, Sanfilippo Type A, @Hope for Merrick 🤍 Noah, Niemann Pick Type C Please, please share 🙏🏻 #dementia #dementiaawareness #raredisease #specialneedskids #specialneedsparenting

Before Leni was diagnosed, we didn’t know that children could get dementia either or the catastrophic impact of this diagnosis - both for the child and the people that love them. The more people understand childhood dementia, the more awareness we can bring - and awareness is absolutely vital if these beautiful kids are ever going to get access to the treatment that they desperately need. #girlmom #mumanddaughter #medicalmom #dementia #toddlertok

One year since Sanfilippo changed our world. One year of learning to live with the unimaginable. One year of relentlessly fighting for our little Leni. One year of loving her more than words could ever explain 💛 Today marks one year since Leni was diagnosed with Sanfilippo Syndrome, a form of Childhood Dementia. The day that our lives were split in two - before Leni’s diagnosis, and after. Everything we had imagined for Leni and our family was ripped away in one phone call, and suddenly the future seemed terrifying. Overnight we crashed into this world we didn’t know existed, navigating unknowns we never expected. The last 12 months have been brutal. Our hearts have been repeatedly shattered into millions of pieces. The grief and devastation is often overwhelming. The appointments, the waiting, the worrying, and the heartbreak. At times we don’t know how we are going to survive this. But the last 12 months have also forced us to live in the moment and shown us just how beautiful people can be. We’ve found strength we never knew we had, and discovered that joy and heartbreak can exist side by side. We’ve met incredible people, raise a huge amount of awareness and almost £450,000, and learned to appreciate the little things in a much bigger way. We still don’t know what Leni’s future looks like, and we are still terrified. But there is real hope. Hope for treatments and hope for a different future for Leni. We will keep learning, keep fighting, keep raising awareness and keep doing everything we can for our sweet little girl. One year on, we are totally different people. We carry more knowledge, more fear, more heartbreak, more determination, and an even deeper appreciation for the time we have together. Today is a huge mix of emotions, but mainly we feel pride. Pride in what we have achieved over the last 12 months, pride in managing to survive the unsurvivable, and so much pride for Leni. Being her parents is the greatest privilege of our lives, and despite everything we would choose this life over and over again if it meant we get to have Leni 💛 #sanfilippo #dementiaawareness #toddlertok #sendparents #mumanddaughter

Individually rare, collectively as common as Childhood Cancer - but no one knows it exists. We wanted to shine a light on some of the brave, beautiful children with dementia, and the heartbreaking conditions they are battling. Over 50,000 babies are born with one of the 145 different genetic conditions that cause Childhood Dementia every year. All of these conditions are terminal, taking a life every 11 minutes, with an average life expectancy of just 10 years old. Childhood Dementia is progressive. Children are often born apparently healthy then over time lose the ability to walk, talk, run, play, eat, drink & eventually their lives. It’s cruel, relentless & devastating. There are no approved treatments for many Childhood Dementia-causing conditions anywhere in the world & over half have no active clinical trials. We are fighting to change that, and together we can save these brave, beautiful children… 🤍 Sadie, Sanfilippo Type A, @Sadie & Fam 🤍 Henry, Hunter 🤍 Remi, Rett 🤍 Lottie, Sanfilippo Type A & Down Syndrome 🤍 Liam, Niemann Pick Type C 🤍 Grant & Hazel, MCAHS1, @Hazel Mae-Medical 🤍 Liv, Sanfilippo Type B, @Saving Liv 🤍 Charli, Batten 🤍 Poppy & Oliver, Sanfilippo Type B, @Cure Poppy + Oliver 💜 🤍 Benjamin, Hunter 🤍 Veda, Sanfilippo Type A, @Saving Veda 🤍 Cody, Sanfilippo Type A, @codys_fight 🤍 Nellie, MLD 🤍 Clark, Sanfilippo Type A, @Cloey | Sanfilippo Mama 💜 🤍 Sophia, Sanfilippo Type A 🤍 Bertie, BPAN, @Bertie’sBpanJourney💙 🤍 Scarlett, BPAN, @Scarletts BPAN Battle 💗 🤍 Emilia, Sanfilippo Type A 🤍 Elle, Sanfilippo Type C, @Team Elle 🤍 Nikolai, Hunter 🤍 Julek, INAD 🤍 Merrick, Sanfilippo Type A, @Hope for Merrick 🤍 Noah, Niemann Pick Type C Please, please share 🙏🏻 #dementia #dementiaawareness #raredisease #specialneedskids #specialneedsparenting

Before Leni was diagnosed, we didn’t know that children could get dementia either or the catastrophic impact of this diagnosis - both for the child and the people that love them. The more people understand childhood dementia, the more awareness we can bring - and awareness is absolutely vital if these beautiful kids are ever going to get access to the treatment that they desperately need. #girlmom #mumanddaughter #medicalmom #dementia #toddlertok

One year since Sanfilippo changed our world. One year of learning to live with the unimaginable. One year of relentlessly fighting for our little Leni. One year of loving her more than words could ever explain 💛 Today marks one year since Leni was diagnosed with Sanfilippo Syndrome, a form of Childhood Dementia. The day that our lives were split in two - before Leni’s diagnosis, and after. Everything we had imagined for Leni and our family was ripped away in one phone call, and suddenly the future seemed terrifying. Overnight we crashed into this world we didn’t know existed, navigating unknowns we never expected. The last 12 months have been brutal. Our hearts have been repeatedly shattered into millions of pieces. The grief and devastation is often overwhelming. The appointments, the waiting, the worrying, and the heartbreak. At times we don’t know how we are going to survive this. But the last 12 months have also forced us to live in the moment and shown us just how beautiful people can be. We’ve found strength we never knew we had, and discovered that joy and heartbreak can exist side by side. We’ve met incredible people, raise a huge amount of awareness and almost £450,000, and learned to appreciate the little things in a much bigger way. We still don’t know what Leni’s future looks like, and we are still terrified. But there is real hope. Hope for treatments and hope for a different future for Leni. We will keep learning, keep fighting, keep raising awareness and keep doing everything we can for our sweet little girl. One year on, we are totally different people. We carry more knowledge, more fear, more heartbreak, more determination, and an even deeper appreciation for the time we have together. Today is a huge mix of emotions, but mainly we feel pride. Pride in what we have achieved over the last 12 months, pride in managing to survive the unsurvivable, and so much pride for Leni. Being her parents is the greatest privilege of our lives, and despite everything we would choose this life over and over again if it meant we get to have Leni 💛 #sanfilippo #dementiaawareness #toddlertok #sendparents #mumanddaughter

Individually rare, collectively as common as Childhood Cancer - but no one knows it exists. We wanted to shine a light on some of the brave, beautiful children with dementia, and the heartbreaking conditions they are battling. Over 50,000 babies are born with one of the 145 different genetic conditions that cause Childhood Dementia every year. All of these conditions are terminal, taking a life every 11 minutes, with an average life expectancy of just 10 years old. Childhood Dementia is progressive. Children are often born apparently healthy then over time lose the ability to walk, talk, run, play, eat, drink & eventually their lives. It’s cruel, relentless & devastating. There are no approved treatments for many Childhood Dementia-causing conditions anywhere in the world & over half have no active clinical trials. We are fighting to change that, and together we can save these brave, beautiful children… 🤍 Sadie, Sanfilippo Type A, @Sadie & Fam 🤍 Henry, Hunter 🤍 Remi, Rett 🤍 Lottie, Sanfilippo Type A & Down Syndrome 🤍 Liam, Niemann Pick Type C 🤍 Grant & Hazel, MCAHS1, @Hazel Mae-Medical 🤍 Liv, Sanfilippo Type B, @Saving Liv 🤍 Charli, Batten 🤍 Poppy & Oliver, Sanfilippo Type B, @Cure Poppy + Oliver 💜 🤍 Benjamin, Hunter 🤍 Veda, Sanfilippo Type A, @Saving Veda 🤍 Cody, Sanfilippo Type A, @codys_fight 🤍 Nellie, MLD 🤍 Clark, Sanfilippo Type A, @Cloey | Sanfilippo Mama 💜 🤍 Sophia, Sanfilippo Type A 🤍 Bertie, BPAN, @Bertie’sBpanJourney💙 🤍 Scarlett, BPAN, @Scarletts BPAN Battle 💗 🤍 Emilia, Sanfilippo Type A 🤍 Elle, Sanfilippo Type C, @Team Elle 🤍 Nikolai, Hunter 🤍 Julek, INAD 🤍 Merrick, Sanfilippo Type A, @Hope for Merrick 🤍 Noah, Niemann Pick Type C Please, please share 🙏🏻 #dementia #dementiaawareness #raredisease #specialneedskids #specialneedsparenting

Before Leni was diagnosed, we didn’t know that children could get dementia either or the catastrophic impact of this diagnosis - both for the child and the people that love them. The more people understand childhood dementia, the more awareness we can bring - and awareness is absolutely vital if these beautiful kids are ever going to get access to the treatment that they desperately need. #girlmom #mumanddaughter #medicalmom #dementia #toddlertok

One year since Sanfilippo changed our world. One year of learning to live with the unimaginable. One year of relentlessly fighting for our little Leni. One year of loving her more than words could ever explain 💛 Today marks one year since Leni was diagnosed with Sanfilippo Syndrome, a form of Childhood Dementia. The day that our lives were split in two - before Leni’s diagnosis, and after. Everything we had imagined for Leni and our family was ripped away in one phone call, and suddenly the future seemed terrifying. Overnight we crashed into this world we didn’t know existed, navigating unknowns we never expected. The last 12 months have been brutal. Our hearts have been repeatedly shattered into millions of pieces. The grief and devastation is often overwhelming. The appointments, the waiting, the worrying, and the heartbreak. At times we don’t know how we are going to survive this. But the last 12 months have also forced us to live in the moment and shown us just how beautiful people can be. We’ve found strength we never knew we had, and discovered that joy and heartbreak can exist side by side. We’ve met incredible people, raise a huge amount of awareness and almost £450,000, and learned to appreciate the little things in a much bigger way. We still don’t know what Leni’s future looks like, and we are still terrified. But there is real hope. Hope for treatments and hope for a different future for Leni. We will keep learning, keep fighting, keep raising awareness and keep doing everything we can for our sweet little girl. One year on, we are totally different people. We carry more knowledge, more fear, more heartbreak, more determination, and an even deeper appreciation for the time we have together. Today is a huge mix of emotions, but mainly we feel pride. Pride in what we have achieved over the last 12 months, pride in managing to survive the unsurvivable, and so much pride for Leni. Being her parents is the greatest privilege of our lives, and despite everything we would choose this life over and over again if it meant we get to have Leni 💛 #sanfilippo #dementiaawareness #toddlertok #sendparents #mumanddaughter

Individually rare, collectively as common as Childhood Cancer - but no one knows it exists. We wanted to shine a light on some of the brave, beautiful children with dementia, and the heartbreaking conditions they are battling. Over 50,000 babies are born with one of the 145 different genetic conditions that cause Childhood Dementia every year. All of these conditions are terminal, taking a life every 11 minutes, with an average life expectancy of just 10 years old. Childhood Dementia is progressive. Children are often born apparently healthy then over time lose the ability to walk, talk, run, play, eat, drink & eventually their lives. It’s cruel, relentless & devastating. There are no approved treatments for many Childhood Dementia-causing conditions anywhere in the world & over half have no active clinical trials. We are fighting to change that, and together we can save these brave, beautiful children… 🤍 Sadie, Sanfilippo Type A, @Sadie & Fam 🤍 Henry, Hunter 🤍 Remi, Rett 🤍 Lottie, Sanfilippo Type A & Down Syndrome 🤍 Liam, Niemann Pick Type C 🤍 Grant & Hazel, MCAHS1, @Hazel Mae-Medical 🤍 Liv, Sanfilippo Type B, @Saving Liv 🤍 Charli, Batten 🤍 Poppy & Oliver, Sanfilippo Type B, @Cure Poppy + Oliver 💜 🤍 Benjamin, Hunter 🤍 Veda, Sanfilippo Type A, @Saving Veda 🤍 Cody, Sanfilippo Type A, @codys_fight 🤍 Nellie, MLD 🤍 Clark, Sanfilippo Type A, @Cloey | Sanfilippo Mama 💜 🤍 Sophia, Sanfilippo Type A 🤍 Bertie, BPAN, @Bertie’sBpanJourney💙 🤍 Scarlett, BPAN, @Scarletts BPAN Battle 💗 🤍 Emilia, Sanfilippo Type A 🤍 Elle, Sanfilippo Type C, @Team Elle 🤍 Nikolai, Hunter 🤍 Julek, INAD 🤍 Merrick, Sanfilippo Type A, @Hope for Merrick 🤍 Noah, Niemann Pick Type C Please, please share 🙏🏻 #dementia #dementiaawareness #raredisease #specialneedskids #specialneedsparenting

Before Leni was diagnosed, we didn’t know that children could get dementia either or the catastrophic impact of this diagnosis - both for the child and the people that love them. The more people understand childhood dementia, the more awareness we can bring - and awareness is absolutely vital if these beautiful kids are ever going to get access to the treatment that they desperately need. #girlmom #mumanddaughter #medicalmom #dementia #toddlertok

One year since Sanfilippo changed our world. One year of learning to live with the unimaginable. One year of relentlessly fighting for our little Leni. One year of loving her more than words could ever explain 💛 Today marks one year since Leni was diagnosed with Sanfilippo Syndrome, a form of Childhood Dementia. The day that our lives were split in two - before Leni’s diagnosis, and after. Everything we had imagined for Leni and our family was ripped away in one phone call, and suddenly the future seemed terrifying. Overnight we crashed into this world we didn’t know existed, navigating unknowns we never expected. The last 12 months have been brutal. Our hearts have been repeatedly shattered into millions of pieces. The grief and devastation is often overwhelming. The appointments, the waiting, the worrying, and the heartbreak. At times we don’t know how we are going to survive this. But the last 12 months have also forced us to live in the moment and shown us just how beautiful people can be. We’ve found strength we never knew we had, and discovered that joy and heartbreak can exist side by side. We’ve met incredible people, raise a huge amount of awareness and almost £450,000, and learned to appreciate the little things in a much bigger way. We still don’t know what Leni’s future looks like, and we are still terrified. But there is real hope. Hope for treatments and hope for a different future for Leni. We will keep learning, keep fighting, keep raising awareness and keep doing everything we can for our sweet little girl. One year on, we are totally different people. We carry more knowledge, more fear, more heartbreak, more determination, and an even deeper appreciation for the time we have together. Today is a huge mix of emotions, but mainly we feel pride. Pride in what we have achieved over the last 12 months, pride in managing to survive the unsurvivable, and so much pride for Leni. Being her parents is the greatest privilege of our lives, and despite everything we would choose this life over and over again if it meant we get to have Leni 💛 #sanfilippo #dementiaawareness #toddlertok #sendparents #mumanddaughter

Individually rare, collectively as common as Childhood Cancer - but no one knows it exists. We wanted to shine a light on some of the brave, beautiful children with dementia, and the heartbreaking conditions they are battling. Over 50,000 babies are born with one of the 145 different genetic conditions that cause Childhood Dementia every year. All of these conditions are terminal, taking a life every 11 minutes, with an average life expectancy of just 10 years old. Childhood Dementia is progressive. Children are often born apparently healthy then over time lose the ability to walk, talk, run, play, eat, drink & eventually their lives. It’s cruel, relentless & devastating. There are no approved treatments for many Childhood Dementia-causing conditions anywhere in the world & over half have no active clinical trials. We are fighting to change that, and together we can save these brave, beautiful children… 🤍 Sadie, Sanfilippo Type A, @Sadie & Fam 🤍 Henry, Hunter 🤍 Remi, Rett 🤍 Lottie, Sanfilippo Type A & Down Syndrome 🤍 Liam, Niemann Pick Type C 🤍 Grant & Hazel, MCAHS1, @Hazel Mae-Medical 🤍 Liv, Sanfilippo Type B, @Saving Liv 🤍 Charli, Batten 🤍 Poppy & Oliver, Sanfilippo Type B, @Cure Poppy + Oliver 💜 🤍 Benjamin, Hunter 🤍 Veda, Sanfilippo Type A, @Saving Veda 🤍 Cody, Sanfilippo Type A, @codys_fight 🤍 Nellie, MLD 🤍 Clark, Sanfilippo Type A, @Cloey | Sanfilippo Mama 💜 🤍 Sophia, Sanfilippo Type A 🤍 Bertie, BPAN, @Bertie’sBpanJourney💙 🤍 Scarlett, BPAN, @Scarletts BPAN Battle 💗 🤍 Emilia, Sanfilippo Type A 🤍 Elle, Sanfilippo Type C, @Team Elle 🤍 Nikolai, Hunter 🤍 Julek, INAD 🤍 Merrick, Sanfilippo Type A, @Hope for Merrick 🤍 Noah, Niemann Pick Type C Please, please share 🙏🏻 #dementia #dementiaawareness #raredisease #specialneedskids #specialneedsparenting

Before Leni was diagnosed, we didn’t know that children could get dementia either or the catastrophic impact of this diagnosis - both for the child and the people that love them. The more people understand childhood dementia, the more awareness we can bring - and awareness is absolutely vital if these beautiful kids are ever going to get access to the treatment that they desperately need. #girlmom #mumanddaughter #medicalmom #dementia #toddlertok

One year since Sanfilippo changed our world. One year of learning to live with the unimaginable. One year of relentlessly fighting for our little Leni. One year of loving her more than words could ever explain 💛 Today marks one year since Leni was diagnosed with Sanfilippo Syndrome, a form of Childhood Dementia. The day that our lives were split in two - before Leni’s diagnosis, and after. Everything we had imagined for Leni and our family was ripped away in one phone call, and suddenly the future seemed terrifying. Overnight we crashed into this world we didn’t know existed, navigating unknowns we never expected. The last 12 months have been brutal. Our hearts have been repeatedly shattered into millions of pieces. The grief and devastation is often overwhelming. The appointments, the waiting, the worrying, and the heartbreak. At times we don’t know how we are going to survive this. But the last 12 months have also forced us to live in the moment and shown us just how beautiful people can be. We’ve found strength we never knew we had, and discovered that joy and heartbreak can exist side by side. We’ve met incredible people, raise a huge amount of awareness and almost £450,000, and learned to appreciate the little things in a much bigger way. We still don’t know what Leni’s future looks like, and we are still terrified. But there is real hope. Hope for treatments and hope for a different future for Leni. We will keep learning, keep fighting, keep raising awareness and keep doing everything we can for our sweet little girl. One year on, we are totally different people. We carry more knowledge, more fear, more heartbreak, more determination, and an even deeper appreciation for the time we have together. Today is a huge mix of emotions, but mainly we feel pride. Pride in what we have achieved over the last 12 months, pride in managing to survive the unsurvivable, and so much pride for Leni. Being her parents is the greatest privilege of our lives, and despite everything we would choose this life over and over again if it meant we get to have Leni 💛 #sanfilippo #dementiaawareness #toddlertok #sendparents #mumanddaughter

Individually rare, collectively as common as Childhood Cancer - but no one knows it exists. We wanted to shine a light on some of the brave, beautiful children with dementia, and the heartbreaking conditions they are battling. Over 50,000 babies are born with one of the 145 different genetic conditions that cause Childhood Dementia every year. All of these conditions are terminal, taking a life every 11 minutes, with an average life expectancy of just 10 years old. Childhood Dementia is progressive. Children are often born apparently healthy then over time lose the ability to walk, talk, run, play, eat, drink & eventually their lives. It’s cruel, relentless & devastating. There are no approved treatments for many Childhood Dementia-causing conditions anywhere in the world & over half have no active clinical trials. We are fighting to change that, and together we can save these brave, beautiful children… 🤍 Sadie, Sanfilippo Type A, @Sadie & Fam 🤍 Henry, Hunter 🤍 Remi, Rett 🤍 Lottie, Sanfilippo Type A & Down Syndrome 🤍 Liam, Niemann Pick Type C 🤍 Grant & Hazel, MCAHS1, @Hazel Mae-Medical 🤍 Liv, Sanfilippo Type B, @Saving Liv 🤍 Charli, Batten 🤍 Poppy & Oliver, Sanfilippo Type B, @Cure Poppy + Oliver 💜 🤍 Benjamin, Hunter 🤍 Veda, Sanfilippo Type A, @Saving Veda 🤍 Cody, Sanfilippo Type A, @codys_fight 🤍 Nellie, MLD 🤍 Clark, Sanfilippo Type A, @Cloey | Sanfilippo Mama 💜 🤍 Sophia, Sanfilippo Type A 🤍 Bertie, BPAN, @Bertie’sBpanJourney💙 🤍 Scarlett, BPAN, @Scarletts BPAN Battle 💗 🤍 Emilia, Sanfilippo Type A 🤍 Elle, Sanfilippo Type C, @Team Elle 🤍 Nikolai, Hunter 🤍 Julek, INAD 🤍 Merrick, Sanfilippo Type A, @Hope for Merrick 🤍 Noah, Niemann Pick Type C Please, please share 🙏🏻 #dementia #dementiaawareness #raredisease #specialneedskids #specialneedsparenting

Before Leni was diagnosed, we didn’t know that children could get dementia either or the catastrophic impact of this diagnosis - both for the child and the people that love them. The more people understand childhood dementia, the more awareness we can bring - and awareness is absolutely vital if these beautiful kids are ever going to get access to the treatment that they desperately need. #girlmom #mumanddaughter #medicalmom #dementia #toddlertok

One year since Sanfilippo changed our world. One year of learning to live with the unimaginable. One year of relentlessly fighting for our little Leni. One year of loving her more than words could ever explain 💛 Today marks one year since Leni was diagnosed with Sanfilippo Syndrome, a form of Childhood Dementia. The day that our lives were split in two - before Leni’s diagnosis, and after. Everything we had imagined for Leni and our family was ripped away in one phone call, and suddenly the future seemed terrifying. Overnight we crashed into this world we didn’t know existed, navigating unknowns we never expected. The last 12 months have been brutal. Our hearts have been repeatedly shattered into millions of pieces. The grief and devastation is often overwhelming. The appointments, the waiting, the worrying, and the heartbreak. At times we don’t know how we are going to survive this. But the last 12 months have also forced us to live in the moment and shown us just how beautiful people can be. We’ve found strength we never knew we had, and discovered that joy and heartbreak can exist side by side. We’ve met incredible people, raise a huge amount of awareness and almost £450,000, and learned to appreciate the little things in a much bigger way. We still don’t know what Leni’s future looks like, and we are still terrified. But there is real hope. Hope for treatments and hope for a different future for Leni. We will keep learning, keep fighting, keep raising awareness and keep doing everything we can for our sweet little girl. One year on, we are totally different people. We carry more knowledge, more fear, more heartbreak, more determination, and an even deeper appreciation for the time we have together. Today is a huge mix of emotions, but mainly we feel pride. Pride in what we have achieved over the last 12 months, pride in managing to survive the unsurvivable, and so much pride for Leni. Being her parents is the greatest privilege of our lives, and despite everything we would choose this life over and over again if it meant we get to have Leni 💛 #sanfilippo #dementiaawareness #toddlertok #sendparents #mumanddaughter

Individually rare, collectively as common as Childhood Cancer - but no one knows it exists. We wanted to shine a light on some of the brave, beautiful children with dementia, and the heartbreaking conditions they are battling. Over 50,000 babies are born with one of the 145 different genetic conditions that cause Childhood Dementia every year. All of these conditions are terminal, taking a life every 11 minutes, with an average life expectancy of just 10 years old. Childhood Dementia is progressive. Children are often born apparently healthy then over time lose the ability to walk, talk, run, play, eat, drink & eventually their lives. It’s cruel, relentless & devastating. There are no approved treatments for many Childhood Dementia-causing conditions anywhere in the world & over half have no active clinical trials. We are fighting to change that, and together we can save these brave, beautiful children… 🤍 Sadie, Sanfilippo Type A, @Sadie & Fam 🤍 Henry, Hunter 🤍 Remi, Rett 🤍 Lottie, Sanfilippo Type A & Down Syndrome 🤍 Liam, Niemann Pick Type C 🤍 Grant & Hazel, MCAHS1, @Hazel Mae-Medical 🤍 Liv, Sanfilippo Type B, @Saving Liv 🤍 Charli, Batten 🤍 Poppy & Oliver, Sanfilippo Type B, @Cure Poppy + Oliver 💜 🤍 Benjamin, Hunter 🤍 Veda, Sanfilippo Type A, @Saving Veda 🤍 Cody, Sanfilippo Type A, @codys_fight 🤍 Nellie, MLD 🤍 Clark, Sanfilippo Type A, @Cloey | Sanfilippo Mama 💜 🤍 Sophia, Sanfilippo Type A 🤍 Bertie, BPAN, @Bertie’sBpanJourney💙 🤍 Scarlett, BPAN, @Scarletts BPAN Battle 💗 🤍 Emilia, Sanfilippo Type A 🤍 Elle, Sanfilippo Type C, @Team Elle 🤍 Nikolai, Hunter 🤍 Julek, INAD 🤍 Merrick, Sanfilippo Type A, @Hope for Merrick 🤍 Noah, Niemann Pick Type C Please, please share 🙏🏻 #dementia #dementiaawareness #raredisease #specialneedskids #specialneedsparenting

Before Leni was diagnosed, we didn’t know that children could get dementia either or the catastrophic impact of this diagnosis - both for the child and the people that love them. The more people understand childhood dementia, the more awareness we can bring - and awareness is absolutely vital if these beautiful kids are ever going to get access to the treatment that they desperately need. #girlmom #mumanddaughter #medicalmom #dementia #toddlertok

One year since Sanfilippo changed our world. One year of learning to live with the unimaginable. One year of relentlessly fighting for our little Leni. One year of loving her more than words could ever explain 💛 Today marks one year since Leni was diagnosed with Sanfilippo Syndrome, a form of Childhood Dementia. The day that our lives were split in two - before Leni’s diagnosis, and after. Everything we had imagined for Leni and our family was ripped away in one phone call, and suddenly the future seemed terrifying. Overnight we crashed into this world we didn’t know existed, navigating unknowns we never expected. The last 12 months have been brutal. Our hearts have been repeatedly shattered into millions of pieces. The grief and devastation is often overwhelming. The appointments, the waiting, the worrying, and the heartbreak. At times we don’t know how we are going to survive this. But the last 12 months have also forced us to live in the moment and shown us just how beautiful people can be. We’ve found strength we never knew we had, and discovered that joy and heartbreak can exist side by side. We’ve met incredible people, raise a huge amount of awareness and almost £450,000, and learned to appreciate the little things in a much bigger way. We still don’t know what Leni’s future looks like, and we are still terrified. But there is real hope. Hope for treatments and hope for a different future for Leni. We will keep learning, keep fighting, keep raising awareness and keep doing everything we can for our sweet little girl. One year on, we are totally different people. We carry more knowledge, more fear, more heartbreak, more determination, and an even deeper appreciation for the time we have together. Today is a huge mix of emotions, but mainly we feel pride. Pride in what we have achieved over the last 12 months, pride in managing to survive the unsurvivable, and so much pride for Leni. Being her parents is the greatest privilege of our lives, and despite everything we would choose this life over and over again if it meant we get to have Leni 💛 #sanfilippo #dementiaawareness #toddlertok #sendparents #mumanddaughter

Individually rare, collectively as common as Childhood Cancer - but no one knows it exists. We wanted to shine a light on some of the brave, beautiful children with dementia, and the heartbreaking conditions they are battling. Over 50,000 babies are born with one of the 145 different genetic conditions that cause Childhood Dementia every year. All of these conditions are terminal, taking a life every 11 minutes, with an average life expectancy of just 10 years old. Childhood Dementia is progressive. Children are often born apparently healthy then over time lose the ability to walk, talk, run, play, eat, drink & eventually their lives. It’s cruel, relentless & devastating. There are no approved treatments for many Childhood Dementia-causing conditions anywhere in the world & over half have no active clinical trials. We are fighting to change that, and together we can save these brave, beautiful children… 🤍 Sadie, Sanfilippo Type A, @Sadie & Fam 🤍 Henry, Hunter 🤍 Remi, Rett 🤍 Lottie, Sanfilippo Type A & Down Syndrome 🤍 Liam, Niemann Pick Type C 🤍 Grant & Hazel, MCAHS1, @Hazel Mae-Medical 🤍 Liv, Sanfilippo Type B, @Saving Liv 🤍 Charli, Batten 🤍 Poppy & Oliver, Sanfilippo Type B, @Cure Poppy + Oliver 💜 🤍 Benjamin, Hunter 🤍 Veda, Sanfilippo Type A, @Saving Veda 🤍 Cody, Sanfilippo Type A, @codys_fight 🤍 Nellie, MLD 🤍 Clark, Sanfilippo Type A, @Cloey | Sanfilippo Mama 💜 🤍 Sophia, Sanfilippo Type A 🤍 Bertie, BPAN, @Bertie’sBpanJourney💙 🤍 Scarlett, BPAN, @Scarletts BPAN Battle 💗 🤍 Emilia, Sanfilippo Type A 🤍 Elle, Sanfilippo Type C, @Team Elle 🤍 Nikolai, Hunter 🤍 Julek, INAD 🤍 Merrick, Sanfilippo Type A, @Hope for Merrick 🤍 Noah, Niemann Pick Type C Please, please share 🙏🏻 #dementia #dementiaawareness #raredisease #specialneedskids #specialneedsparenting

Before Leni was diagnosed, we didn’t know that children could get dementia either or the catastrophic impact of this diagnosis - both for the child and the people that love them. The more people understand childhood dementia, the more awareness we can bring - and awareness is absolutely vital if these beautiful kids are ever going to get access to the treatment that they desperately need. #girlmom #mumanddaughter #medicalmom #dementia #toddlertok

One year since Sanfilippo changed our world. One year of learning to live with the unimaginable. One year of relentlessly fighting for our little Leni. One year of loving her more than words could ever explain 💛 Today marks one year since Leni was diagnosed with Sanfilippo Syndrome, a form of Childhood Dementia. The day that our lives were split in two - before Leni’s diagnosis, and after. Everything we had imagined for Leni and our family was ripped away in one phone call, and suddenly the future seemed terrifying. Overnight we crashed into this world we didn’t know existed, navigating unknowns we never expected. The last 12 months have been brutal. Our hearts have been repeatedly shattered into millions of pieces. The grief and devastation is often overwhelming. The appointments, the waiting, the worrying, and the heartbreak. At times we don’t know how we are going to survive this. But the last 12 months have also forced us to live in the moment and shown us just how beautiful people can be. We’ve found strength we never knew we had, and discovered that joy and heartbreak can exist side by side. We’ve met incredible people, raise a huge amount of awareness and almost £450,000, and learned to appreciate the little things in a much bigger way. We still don’t know what Leni’s future looks like, and we are still terrified. But there is real hope. Hope for treatments and hope for a different future for Leni. We will keep learning, keep fighting, keep raising awareness and keep doing everything we can for our sweet little girl. One year on, we are totally different people. We carry more knowledge, more fear, more heartbreak, more determination, and an even deeper appreciation for the time we have together. Today is a huge mix of emotions, but mainly we feel pride. Pride in what we have achieved over the last 12 months, pride in managing to survive the unsurvivable, and so much pride for Leni. Being her parents is the greatest privilege of our lives, and despite everything we would choose this life over and over again if it meant we get to have Leni 💛 #sanfilippo #dementiaawareness #toddlertok #sendparents #mumanddaughter

Individually rare, collectively as common as Childhood Cancer - but no one knows it exists. We wanted to shine a light on some of the brave, beautiful children with dementia, and the heartbreaking conditions they are battling. Over 50,000 babies are born with one of the 145 different genetic conditions that cause Childhood Dementia every year. All of these conditions are terminal, taking a life every 11 minutes, with an average life expectancy of just 10 years old. Childhood Dementia is progressive. Children are often born apparently healthy then over time lose the ability to walk, talk, run, play, eat, drink & eventually their lives. It’s cruel, relentless & devastating. There are no approved treatments for many Childhood Dementia-causing conditions anywhere in the world & over half have no active clinical trials. We are fighting to change that, and together we can save these brave, beautiful children… 🤍 Sadie, Sanfilippo Type A, @Sadie & Fam 🤍 Henry, Hunter 🤍 Remi, Rett 🤍 Lottie, Sanfilippo Type A & Down Syndrome 🤍 Liam, Niemann Pick Type C 🤍 Grant & Hazel, MCAHS1, @Hazel Mae-Medical 🤍 Liv, Sanfilippo Type B, @Saving Liv 🤍 Charli, Batten 🤍 Poppy & Oliver, Sanfilippo Type B, @Cure Poppy + Oliver 💜 🤍 Benjamin, Hunter 🤍 Veda, Sanfilippo Type A, @Saving Veda 🤍 Cody, Sanfilippo Type A, @codys_fight 🤍 Nellie, MLD 🤍 Clark, Sanfilippo Type A, @Cloey | Sanfilippo Mama 💜 🤍 Sophia, Sanfilippo Type A 🤍 Bertie, BPAN, @Bertie’sBpanJourney💙 🤍 Scarlett, BPAN, @Scarletts BPAN Battle 💗 🤍 Emilia, Sanfilippo Type A 🤍 Elle, Sanfilippo Type C, @Team Elle 🤍 Nikolai, Hunter 🤍 Julek, INAD 🤍 Merrick, Sanfilippo Type A, @Hope for Merrick 🤍 Noah, Niemann Pick Type C Please, please share 🙏🏻 #dementia #dementiaawareness #raredisease #specialneedskids #specialneedsparenting

Before Leni was diagnosed, we didn’t know that children could get dementia either or the catastrophic impact of this diagnosis - both for the child and the people that love them. The more people understand childhood dementia, the more awareness we can bring - and awareness is absolutely vital if these beautiful kids are ever going to get access to the treatment that they desperately need. #girlmom #mumanddaughter #medicalmom #dementia #toddlertok

One year since Sanfilippo changed our world. One year of learning to live with the unimaginable. One year of relentlessly fighting for our little Leni. One year of loving her more than words could ever explain 💛 Today marks one year since Leni was diagnosed with Sanfilippo Syndrome, a form of Childhood Dementia. The day that our lives were split in two - before Leni’s diagnosis, and after. Everything we had imagined for Leni and our family was ripped away in one phone call, and suddenly the future seemed terrifying. Overnight we crashed into this world we didn’t know existed, navigating unknowns we never expected. The last 12 months have been brutal. Our hearts have been repeatedly shattered into millions of pieces. The grief and devastation is often overwhelming. The appointments, the waiting, the worrying, and the heartbreak. At times we don’t know how we are going to survive this. But the last 12 months have also forced us to live in the moment and shown us just how beautiful people can be. We’ve found strength we never knew we had, and discovered that joy and heartbreak can exist side by side. We’ve met incredible people, raise a huge amount of awareness and almost £450,000, and learned to appreciate the little things in a much bigger way. We still don’t know what Leni’s future looks like, and we are still terrified. But there is real hope. Hope for treatments and hope for a different future for Leni. We will keep learning, keep fighting, keep raising awareness and keep doing everything we can for our sweet little girl. One year on, we are totally different people. We carry more knowledge, more fear, more heartbreak, more determination, and an even deeper appreciation for the time we have together. Today is a huge mix of emotions, but mainly we feel pride. Pride in what we have achieved over the last 12 months, pride in managing to survive the unsurvivable, and so much pride for Leni. Being her parents is the greatest privilege of our lives, and despite everything we would choose this life over and over again if it meant we get to have Leni 💛 #sanfilippo #dementiaawareness #toddlertok #sendparents #mumanddaughter

Individually rare, collectively as common as Childhood Cancer - but no one knows it exists. We wanted to shine a light on some of the brave, beautiful children with dementia, and the heartbreaking conditions they are battling. Over 50,000 babies are born with one of the 145 different genetic conditions that cause Childhood Dementia every year. All of these conditions are terminal, taking a life every 11 minutes, with an average life expectancy of just 10 years old. Childhood Dementia is progressive. Children are often born apparently healthy then over time lose the ability to walk, talk, run, play, eat, drink & eventually their lives. It’s cruel, relentless & devastating. There are no approved treatments for many Childhood Dementia-causing conditions anywhere in the world & over half have no active clinical trials. We are fighting to change that, and together we can save these brave, beautiful children… 🤍 Sadie, Sanfilippo Type A, @Sadie & Fam 🤍 Henry, Hunter 🤍 Remi, Rett 🤍 Lottie, Sanfilippo Type A & Down Syndrome 🤍 Liam, Niemann Pick Type C 🤍 Grant & Hazel, MCAHS1, @Hazel Mae-Medical 🤍 Liv, Sanfilippo Type B, @Saving Liv 🤍 Charli, Batten 🤍 Poppy & Oliver, Sanfilippo Type B, @Cure Poppy + Oliver 💜 🤍 Benjamin, Hunter 🤍 Veda, Sanfilippo Type A, @Saving Veda 🤍 Cody, Sanfilippo Type A, @codys_fight 🤍 Nellie, MLD 🤍 Clark, Sanfilippo Type A, @Cloey | Sanfilippo Mama 💜 🤍 Sophia, Sanfilippo Type A 🤍 Bertie, BPAN, @Bertie’sBpanJourney💙 🤍 Scarlett, BPAN, @Scarletts BPAN Battle 💗 🤍 Emilia, Sanfilippo Type A 🤍 Elle, Sanfilippo Type C, @Team Elle 🤍 Nikolai, Hunter 🤍 Julek, INAD 🤍 Merrick, Sanfilippo Type A, @Hope for Merrick 🤍 Noah, Niemann Pick Type C Please, please share 🙏🏻 #dementia #dementiaawareness #raredisease #specialneedskids #specialneedsparenting

Before Leni was diagnosed, we didn’t know that children could get dementia either or the catastrophic impact of this diagnosis - both for the child and the people that love them. The more people understand childhood dementia, the more awareness we can bring - and awareness is absolutely vital if these beautiful kids are ever going to get access to the treatment that they desperately need. #girlmom #mumanddaughter #medicalmom #dementia #toddlertok

One year since Sanfilippo changed our world. One year of learning to live with the unimaginable. One year of relentlessly fighting for our little Leni. One year of loving her more than words could ever explain 💛 Today marks one year since Leni was diagnosed with Sanfilippo Syndrome, a form of Childhood Dementia. The day that our lives were split in two - before Leni’s diagnosis, and after. Everything we had imagined for Leni and our family was ripped away in one phone call, and suddenly the future seemed terrifying. Overnight we crashed into this world we didn’t know existed, navigating unknowns we never expected. The last 12 months have been brutal. Our hearts have been repeatedly shattered into millions of pieces. The grief and devastation is often overwhelming. The appointments, the waiting, the worrying, and the heartbreak. At times we don’t know how we are going to survive this. But the last 12 months have also forced us to live in the moment and shown us just how beautiful people can be. We’ve found strength we never knew we had, and discovered that joy and heartbreak can exist side by side. We’ve met incredible people, raise a huge amount of awareness and almost £450,000, and learned to appreciate the little things in a much bigger way. We still don’t know what Leni’s future looks like, and we are still terrified. But there is real hope. Hope for treatments and hope for a different future for Leni. We will keep learning, keep fighting, keep raising awareness and keep doing everything we can for our sweet little girl. One year on, we are totally different people. We carry more knowledge, more fear, more heartbreak, more determination, and an even deeper appreciation for the time we have together. Today is a huge mix of emotions, but mainly we feel pride. Pride in what we have achieved over the last 12 months, pride in managing to survive the unsurvivable, and so much pride for Leni. Being her parents is the greatest privilege of our lives, and despite everything we would choose this life over and over again if it meant we get to have Leni 💛 #sanfilippo #dementiaawareness #toddlertok #sendparents #mumanddaughter

Individually rare, collectively as common as Childhood Cancer - but no one knows it exists. We wanted to shine a light on some of the brave, beautiful children with dementia, and the heartbreaking conditions they are battling. Over 50,000 babies are born with one of the 145 different genetic conditions that cause Childhood Dementia every year. All of these conditions are terminal, taking a life every 11 minutes, with an average life expectancy of just 10 years old. Childhood Dementia is progressive. Children are often born apparently healthy then over time lose the ability to walk, talk, run, play, eat, drink & eventually their lives. It’s cruel, relentless & devastating. There are no approved treatments for many Childhood Dementia-causing conditions anywhere in the world & over half have no active clinical trials. We are fighting to change that, and together we can save these brave, beautiful children… 🤍 Sadie, Sanfilippo Type A, @Sadie & Fam 🤍 Henry, Hunter 🤍 Remi, Rett 🤍 Lottie, Sanfilippo Type A & Down Syndrome 🤍 Liam, Niemann Pick Type C 🤍 Grant & Hazel, MCAHS1, @Hazel Mae-Medical 🤍 Liv, Sanfilippo Type B, @Saving Liv 🤍 Charli, Batten 🤍 Poppy & Oliver, Sanfilippo Type B, @Cure Poppy + Oliver 💜 🤍 Benjamin, Hunter 🤍 Veda, Sanfilippo Type A, @Saving Veda 🤍 Cody, Sanfilippo Type A, @codys_fight 🤍 Nellie, MLD 🤍 Clark, Sanfilippo Type A, @Cloey | Sanfilippo Mama 💜 🤍 Sophia, Sanfilippo Type A 🤍 Bertie, BPAN, @Bertie’sBpanJourney💙 🤍 Scarlett, BPAN, @Scarletts BPAN Battle 💗 🤍 Emilia, Sanfilippo Type A 🤍 Elle, Sanfilippo Type C, @Team Elle 🤍 Nikolai, Hunter 🤍 Julek, INAD 🤍 Merrick, Sanfilippo Type A, @Hope for Merrick 🤍 Noah, Niemann Pick Type C Please, please share 🙏🏻 #dementia #dementiaawareness #raredisease #specialneedskids #specialneedsparenting

Before Leni was diagnosed, we didn’t know that children could get dementia either or the catastrophic impact of this diagnosis - both for the child and the people that love them. The more people understand childhood dementia, the more awareness we can bring - and awareness is absolutely vital if these beautiful kids are ever going to get access to the treatment that they desperately need. #girlmom #mumanddaughter #medicalmom #dementia #toddlertok

One year since Sanfilippo changed our world. One year of learning to live with the unimaginable. One year of relentlessly fighting for our little Leni. One year of loving her more than words could ever explain 💛 Today marks one year since Leni was diagnosed with Sanfilippo Syndrome, a form of Childhood Dementia. The day that our lives were split in two - before Leni’s diagnosis, and after. Everything we had imagined for Leni and our family was ripped away in one phone call, and suddenly the future seemed terrifying. Overnight we crashed into this world we didn’t know existed, navigating unknowns we never expected. The last 12 months have been brutal. Our hearts have been repeatedly shattered into millions of pieces. The grief and devastation is often overwhelming. The appointments, the waiting, the worrying, and the heartbreak. At times we don’t know how we are going to survive this. But the last 12 months have also forced us to live in the moment and shown us just how beautiful people can be. We’ve found strength we never knew we had, and discovered that joy and heartbreak can exist side by side. We’ve met incredible people, raise a huge amount of awareness and almost £450,000, and learned to appreciate the little things in a much bigger way. We still don’t know what Leni’s future looks like, and we are still terrified. But there is real hope. Hope for treatments and hope for a different future for Leni. We will keep learning, keep fighting, keep raising awareness and keep doing everything we can for our sweet little girl. One year on, we are totally different people. We carry more knowledge, more fear, more heartbreak, more determination, and an even deeper appreciation for the time we have together. Today is a huge mix of emotions, but mainly we feel pride. Pride in what we have achieved over the last 12 months, pride in managing to survive the unsurvivable, and so much pride for Leni. Being her parents is the greatest privilege of our lives, and despite everything we would choose this life over and over again if it meant we get to have Leni 💛 #sanfilippo #dementiaawareness #toddlertok #sendparents #mumanddaughter

Individually rare, collectively as common as Childhood Cancer - but no one knows it exists. We wanted to shine a light on some of the brave, beautiful children with dementia, and the heartbreaking conditions they are battling. Over 50,000 babies are born with one of the 145 different genetic conditions that cause Childhood Dementia every year. All of these conditions are terminal, taking a life every 11 minutes, with an average life expectancy of just 10 years old. Childhood Dementia is progressive. Children are often born apparently healthy then over time lose the ability to walk, talk, run, play, eat, drink & eventually their lives. It’s cruel, relentless & devastating. There are no approved treatments for many Childhood Dementia-causing conditions anywhere in the world & over half have no active clinical trials. We are fighting to change that, and together we can save these brave, beautiful children… 🤍 Sadie, Sanfilippo Type A, @Sadie & Fam 🤍 Henry, Hunter 🤍 Remi, Rett 🤍 Lottie, Sanfilippo Type A & Down Syndrome 🤍 Liam, Niemann Pick Type C 🤍 Grant & Hazel, MCAHS1, @Hazel Mae-Medical 🤍 Liv, Sanfilippo Type B, @Saving Liv 🤍 Charli, Batten 🤍 Poppy & Oliver, Sanfilippo Type B, @Cure Poppy + Oliver 💜 🤍 Benjamin, Hunter 🤍 Veda, Sanfilippo Type A, @Saving Veda 🤍 Cody, Sanfilippo Type A, @codys_fight 🤍 Nellie, MLD 🤍 Clark, Sanfilippo Type A, @Cloey | Sanfilippo Mama 💜 🤍 Sophia, Sanfilippo Type A 🤍 Bertie, BPAN, @Bertie’sBpanJourney💙 🤍 Scarlett, BPAN, @Scarletts BPAN Battle 💗 🤍 Emilia, Sanfilippo Type A 🤍 Elle, Sanfilippo Type C, @Team Elle 🤍 Nikolai, Hunter 🤍 Julek, INAD 🤍 Merrick, Sanfilippo Type A, @Hope for Merrick 🤍 Noah, Niemann Pick Type C Please, please share 🙏🏻 #dementia #dementiaawareness #raredisease #specialneedskids #specialneedsparenting

Before Leni was diagnosed, we didn’t know that children could get dementia either or the catastrophic impact of this diagnosis - both for the child and the people that love them. The more people understand childhood dementia, the more awareness we can bring - and awareness is absolutely vital if these beautiful kids are ever going to get access to the treatment that they desperately need. #girlmom #mumanddaughter #medicalmom #dementia #toddlertok

One year since Sanfilippo changed our world. One year of learning to live with the unimaginable. One year of relentlessly fighting for our little Leni. One year of loving her more than words could ever explain 💛 Today marks one year since Leni was diagnosed with Sanfilippo Syndrome, a form of Childhood Dementia. The day that our lives were split in two - before Leni’s diagnosis, and after. Everything we had imagined for Leni and our family was ripped away in one phone call, and suddenly the future seemed terrifying. Overnight we crashed into this world we didn’t know existed, navigating unknowns we never expected. The last 12 months have been brutal. Our hearts have been repeatedly shattered into millions of pieces. The grief and devastation is often overwhelming. The appointments, the waiting, the worrying, and the heartbreak. At times we don’t know how we are going to survive this. But the last 12 months have also forced us to live in the moment and shown us just how beautiful people can be. We’ve found strength we never knew we had, and discovered that joy and heartbreak can exist side by side. We’ve met incredible people, raise a huge amount of awareness and almost £450,000, and learned to appreciate the little things in a much bigger way. We still don’t know what Leni’s future looks like, and we are still terrified. But there is real hope. Hope for treatments and hope for a different future for Leni. We will keep learning, keep fighting, keep raising awareness and keep doing everything we can for our sweet little girl. One year on, we are totally different people. We carry more knowledge, more fear, more heartbreak, more determination, and an even deeper appreciation for the time we have together. Today is a huge mix of emotions, but mainly we feel pride. Pride in what we have achieved over the last 12 months, pride in managing to survive the unsurvivable, and so much pride for Leni. Being her parents is the greatest privilege of our lives, and despite everything we would choose this life over and over again if it meant we get to have Leni 💛 #sanfilippo #dementiaawareness #toddlertok #sendparents #mumanddaughter

Individually rare, collectively as common as Childhood Cancer - but no one knows it exists. We wanted to shine a light on some of the brave, beautiful children with dementia, and the heartbreaking conditions they are battling. Over 50,000 babies are born with one of the 145 different genetic conditions that cause Childhood Dementia every year. All of these conditions are terminal, taking a life every 11 minutes, with an average life expectancy of just 10 years old. Childhood Dementia is progressive. Children are often born apparently healthy then over time lose the ability to walk, talk, run, play, eat, drink & eventually their lives. It’s cruel, relentless & devastating. There are no approved treatments for many Childhood Dementia-causing conditions anywhere in the world & over half have no active clinical trials. We are fighting to change that, and together we can save these brave, beautiful children… 🤍 Sadie, Sanfilippo Type A, @Sadie & Fam 🤍 Henry, Hunter 🤍 Remi, Rett 🤍 Lottie, Sanfilippo Type A & Down Syndrome 🤍 Liam, Niemann Pick Type C 🤍 Grant & Hazel, MCAHS1, @Hazel Mae-Medical 🤍 Liv, Sanfilippo Type B, @Saving Liv 🤍 Charli, Batten 🤍 Poppy & Oliver, Sanfilippo Type B, @Cure Poppy + Oliver 💜 🤍 Benjamin, Hunter 🤍 Veda, Sanfilippo Type A, @Saving Veda 🤍 Cody, Sanfilippo Type A, @codys_fight 🤍 Nellie, MLD 🤍 Clark, Sanfilippo Type A, @Cloey | Sanfilippo Mama 💜 🤍 Sophia, Sanfilippo Type A 🤍 Bertie, BPAN, @Bertie’sBpanJourney💙 🤍 Scarlett, BPAN, @Scarletts BPAN Battle 💗 🤍 Emilia, Sanfilippo Type A 🤍 Elle, Sanfilippo Type C, @Team Elle 🤍 Nikolai, Hunter 🤍 Julek, INAD 🤍 Merrick, Sanfilippo Type A, @Hope for Merrick 🤍 Noah, Niemann Pick Type C Please, please share 🙏🏻 #dementia #dementiaawareness #raredisease #specialneedskids #specialneedsparenting

Before Leni was diagnosed, we didn’t know that children could get dementia either or the catastrophic impact of this diagnosis - both for the child and the people that love them. The more people understand childhood dementia, the more awareness we can bring - and awareness is absolutely vital if these beautiful kids are ever going to get access to the treatment that they desperately need. #girlmom #mumanddaughter #medicalmom #dementia #toddlertok

One year since Sanfilippo changed our world. One year of learning to live with the unimaginable. One year of relentlessly fighting for our little Leni. One year of loving her more than words could ever explain 💛 Today marks one year since Leni was diagnosed with Sanfilippo Syndrome, a form of Childhood Dementia. The day that our lives were split in two - before Leni’s diagnosis, and after. Everything we had imagined for Leni and our family was ripped away in one phone call, and suddenly the future seemed terrifying. Overnight we crashed into this world we didn’t know existed, navigating unknowns we never expected. The last 12 months have been brutal. Our hearts have been repeatedly shattered into millions of pieces. The grief and devastation is often overwhelming. The appointments, the waiting, the worrying, and the heartbreak. At times we don’t know how we are going to survive this. But the last 12 months have also forced us to live in the moment and shown us just how beautiful people can be. We’ve found strength we never knew we had, and discovered that joy and heartbreak can exist side by side. We’ve met incredible people, raise a huge amount of awareness and almost £450,000, and learned to appreciate the little things in a much bigger way. We still don’t know what Leni’s future looks like, and we are still terrified. But there is real hope. Hope for treatments and hope for a different future for Leni. We will keep learning, keep fighting, keep raising awareness and keep doing everything we can for our sweet little girl. One year on, we are totally different people. We carry more knowledge, more fear, more heartbreak, more determination, and an even deeper appreciation for the time we have together. Today is a huge mix of emotions, but mainly we feel pride. Pride in what we have achieved over the last 12 months, pride in managing to survive the unsurvivable, and so much pride for Leni. Being her parents is the greatest privilege of our lives, and despite everything we would choose this life over and over again if it meant we get to have Leni 💛 #sanfilippo #dementiaawareness #toddlertok #sendparents #mumanddaughter