Saving Tate 💜

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“Zero activity.” Those two words have been stuck in my head for days. When Tate was diagnosed, I didn’t read every word of every letter. I was trying to process the diagnosis itself. But recently, while filling out paperwork, I read it again. Tate has zero activity in the enzyme affected by his Sanfilippo. His metabolic team have explained that some children have a partially working enzyme, which can mean they regress more slowly. I’d been holding onto hope that Tate had some working activity, that I might have a little more time. Reading that letter has made everything feel even more frightening. He turns six in several weeks, and I’m petrified of what the next year could bring without treatment. I’m scared that by next November he could need tube feeding and that his mobility could have significantly declined, or be gone. I don’t know, and that’s the terrifying part. I feel like I have months, not years, to raise this money before the physical regression takes more from him. The thought of not seeing his tenth birthday is really, really scaring me. I’m not ready to accept a life without treatment. I’m not ready to watch my son lose his abilities in front of my eyes. I need everyone’s help. People with big platforms, people who can make a significant donation, anyone who has lost someone to dementia and understands how cruel it is. Please help me reach the people who could change Tate’s future. I need a miracle, and I can’t make it happen on my own. The fundraising link is below. Every donation and every share could help get my little man closer to treatment. 💜 https://www.justgiving.com/campaign/savingtatefightagainstchildhooddementia #savingtate #sanfilippo #terminal #childhooddementia #fyp

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Some days I feel like I can take on the world. Other days I’m scared shitless and just trying to get through the day. Watching my little man running around, loving life, while grieving the future I pictured for him is something I’ll never get my head around. He’s right here, and I already miss things I haven’t lost yet. I’m grateful for today, terrified of tomorrow, and doing everything I can to give him more of both. 💜 #savingtate #sanfilippo #childhooddementia #SEN #fyp

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A little sneak peek at something I am SO excited about 😭💜 One of my best girls, Georgia, has written and illustrated her own book, Cody’s Magical Secret, about her little man and Sanfilippo, in a way children can understand 🥹 This is a mum juggling two children whilst living the reality of Sanfilippo and watching Cody lose abilities he once had 🥲 Alongside fundraising to save him, she’s poured her heart into creating this beautiful book. And she’s included my little man, complete with his little blue Crocs, alongside Cody and Kole 😭💙 It means more to me than I can explain. When it’s out, I’d love to see it in schools and in your homes, helping children understand kiddos like ours. Every penny raised through sales, will go towards helping her save Cody!! Georgia, I’m so fucking proud of you, mate. 💜 #sanfilippo #codysfight #childhooddementia #childrensbook #fyp @codys_fight @KolesFight