Jacob is in many ways a typical 12 year old boy, who loves Harry Potter, super cars, musicals, Fortnite and WWE. Jacob is incredibly vibrant, sociable, funny and feisty.
Jacob also has a very rare and aggressive type of congenital muscular dystrophy, a condition which attacks and destroys all the muscles in his body. Throughout the last few years Jacob has lost the ability to move almost all his body as well as the ability to eat and drink. There is no cure or treatment for his condition.
Despite this Jacob continues to show real determination to not let it get him down.
Sadly during the last year his condition is now affecting the muscles of his heart, and although some of the side effects are being treated with medication they can’t stop the progression.
Time has suddenly become very precious.
This means that Jacob now has much less energy for doing the things he loves which includes no longer being able to use his power chair outside and is therefore reliant on being pushed.
Jacob loves the outdoors, walking his dog, exploring new places, going to the beach and much more, all of which are no longer possible in his current manual chair. This is devastating for Jacob and for me and his siblings.
Jacob would like to take a sock to Dobby’s ‘grave’ on the beach in Pembrokeshire, attend a musical festival and put a flag ‘of his country’ (his words) at the top of a mountain with his dog - these are wishes that I want to help him achieve.
After much searching we have found a all terrain wheelchair that can be adapted to meet Jacobs specific needs. The company is willing to adapt their showroom display chair due to time sensitivity, although all this comes at a huge cost.
I know we could apply through various charities who may be able to help meet the cost but this cannot be done with speed and time is not on our side.
Please share if you can and we would be truly grateful for any donations no matter how small.
