My only child Tom, has a progressive, life-limiting, muscle wasting condition called Duchenne Muscular Dystrophy, for which there is no cure.

He’s quite shy and reserved until he gets to know you and then you get to enjoy his funny yet sarcastically dry sense of humour that you would expect from any typical 15 year old teenager. Tom loves his gaming and in particular FIFA as he loves football. He also loves building the bigger and more challenging LEGO kits, with Star Wars amongst his favourites.

Tom’s very aware now at 15 of the fate of his condition and is often very depressed. He sees his friends are getting bigger, taller, stronger and their social circle and activities expand with their growing abilities and independence. However for Tom, his own fears and social anxieties diminish his confidence, self belief and esteem, spiralling him into isolation and self loathe.

Duchenne affects all the muscles in Tom’s body, progressively making them weaker. He already struggles to walk for any distance, quickly tiring and is unable to climb more than a few stairs, for which he has a stair lift but won’t be able to use this once he stops walking completely, which could be at any time as children with Duchenne usually lose the ability to walk by their teens, which then progresses to loss of other mobility in the arms and hands and then breathing, until eventual heart failure.

Tom takes many daily medications to help his internal organs and also the heart muscle functioning as he already has cardiomyopathy. The brain is also a muscle, so Tom does struggle to process and maintain memory function, which affects his every day school life, striving to develop and learn like other children who visualise their working futures beyond school and college.

My goal is to make the necessary adaptations in our home so Tom’s life is as accessible and comfortable as possible. To allow him to be as independent as possible for as long as possible and with the dignity that he deserves. To be a welcoming space for friends and family to visit our home as theirs become less accessible to Tom. As Tom’s condition progresses, he will need and rely on many mobility aids, hoists, breathing equipment and full time care.

I have secured a disabled facilities grant from the local authority towards a wet room and bedroom, however post Covid and spiralling costs, means this will only cover a much smaller portion of what are now huge costs, in excess of 85k plus VAT.

The works require reconfiguring and extending the back of the house, converting the garage, widening doors, installing ramps, etc.

With the help of friends, family and our incredible local community, 23K has been raised, for which I’m incredibly grateful.

However, both Tom’s health and my own has been dealt a number of set backs, so I must now ask for help from businesses, companies and other charities that may help me reach the remaining 32k plus VAT.

Time is running out for Tom as he’s slowing down, so I’m very aware of how time critical this is to raise the rest of the funds needed and then to actually get the works started and the following months to complete the those works but I absolutely have to have faith that it will all come together for Tom.

Please support Tom’s adaptations.

Thank you.