Rupert’s Wish to End AHC
Donation protected
Our family have been unified in our cause to raise awareness of AHC and donations for the AHC foundations that are out there to support others like our Rupert. Thank you all for any donations, and we appreciate all the support. Please see the below heart breaking statement from my sister as she details our Ruperts story.
Rupert is battling a rare neurological disease called Alternating Hemiplegia of Childhood. Gene Therapy provides a path to a cure for AHC, a approach has already been successful in many diseases. So please help us save Rupert and give him the life he deserves ❤️ and donate so we can support the AHC foundations.
Rupert was misdiagnosed with epilepsy at 11 months old. It has taken untill now to get the correct diagnosis after months of hospitalisations during which Rupert would suffer from uncontrollable seizures, muscle weaknesss, paralysis and painful dystonia. Rupert was admitted into hospital for three weeks in March where he lost the ability to eat and even suck on his bottle from the amount of seizures he endured, luckily he has regained those skills but there is a possibility he will lose them again. As patients get older, the long-term effects of brain atrophy may not be reversible. He works hard every day on learning new skills such as walking and talking but it is a struggle, the effects of this cruel disease work against him and each attack robs him of the skills he’s worked so hard to gain.
He is and always will be the best thing to ever happen to me, I will only ever feel pain and heartache that I can’t do more to help him live and experience all the things I dreamt for him. Watching him in so much pain, holding him as he battles alone is truly agonising.
Scientists studying AHC have identified three different avenues to create a gene therapy to cure AHC. All three projects are happening right now and this is where we need your help. It really is a race against time. The science is there, the only thing standing in the way is funding.
Please help our Rupert and cure AHC!
Organizer
Finlay Bellerby
Organizer
England