Henry Needs a New Wheelchair

Hello,

My name is Mark and I am Henry's step-father. Henry was diagnosed with a degenerative genetic disorder at the age of 13 and it is a life threatening condition. Currently, there is no cure for Henry's condition and his life expectancy is early adulthood.

Henry is now 29 years old and the amount of effort that he puts in to try and slow his condition down would embarrass those of us who are fit and able enough to exercise. I have never come across anyone as determined as Henry in his fight to try and stabilise his condition. His one hope is that he can keep himself alive long enough, until a cure is found.

Henry has Friedreich's Ataxia. It affects his nervous system and his condition means that he is slowly deteriorating in front of our very eyes. He is a 24/7 wheelchair user and he is looked after by a live in carer. His life is no longer his own, as he slowly loses the ability to do anything for himself. He is registered blind and his carers have to do everything for him. His daily routine has become his prison. All he is able to do is sit in his living room listening to audio books.

Over the 16 years since Henry was diagnosed with his condition, we have had to buy or fund raise for five wheelchairs at a cost of between £3000 - £9000 (his one and only electric wheelchair) each. He is currently using a wheelchair that was provided by wheelchair services but this needs to be urgently replaced, as it is causing Henry huge discomfort because of his scoliosis.

We are hoping to have a wheelchair built to a specification that will help Henry to lead a normal (comfortable) daily life, as he already has enough to worry about, without being in pain for most of his day.

Thank you for taking the time to read this appeal and for any contribution that you are able to make towards helping Henry to purchase a much needed new wheelchair. I am sure that Henry would also like to pass on his appreciation, if he were able to do so.

If we do manage to raise enough to buy Henry a new wheel chair, any remaining funds will be donated to Ataxia UK.

Thank you.