Isaac runs IronKids Wales
Donation protected
Hello!
Meet Isaac, my brave, determined, courageous & much loved son. He is 8 years old but developmentally between 2-4.
3 years ago he was diagnosed with CLN2 Batten Disease, a form of childhood dementia. Following 2 years of seizures, learning difficulties & then losing the ability to walk Isaac was finally diagnosed with one of the cruelest diseases to exist. Not only has he lost a lot of his physical & cognitive abilities he is also almost blind.
As a family, we’re heartbroken & crushed. Each day is a challenge for us all but one we take on with all the courage we can muster. Isaac takes everything in his stride, he LOVES going to school, watching his favourite tv shows, his Tonie box, fast rides, swimming and petting every animal he can get his hands on. He also loves boy humour (he learnt the word bum recently ) having raspberries blown on his tummy & people telling him he has stinky feet.
As Isaac’s family we do everything we can to keep him physically strong and moving, Isaac is happiest when he’s being physically active. We feel we’re at the point where a specialist physio plan & weekly physio sessions would be a great benefit to him, to not only keep his current skills but to perhaps improve them too. I (his Mummy, Aimee) have found a specialist centre called NapaCentre who specialise in physio for children. It is in North London and the physio session are funded by the children’s families, not the NHS. The sessions are £115 each. My plan moving forward is to trial these sessions for 4-6 weeks to see how/if Isaac gains strength & mobility. If he does, depending on funds we will keep attending. (I’ve already learnt a lot myself & and so impressed with Isaac’s physiotherapist!) or if not then we shall stop & just keep doing what we have been doing at home.
This leads me to why I have created this page! A few of our friends and then social media followers have asked if they can sponsor Isaac for his IronKids event I have done as requested set up this new page for Isaac. We thought the money raised from this we will use to pay for his physio sessions.
Thank you in advance for any shares of this page and any sponsorship you can give. We are eternally grateful to every person who’s helped us in anyway. I truly feel it is not just us keeping Isaac strong.. it’s every single one of you too!!
Please visit the following links for regular updates
Isaac’s Instagram page
Facebook
Thank you so much for your support
Team Tilley
Organizer
Aimee Tilley
Organizer