Raising funds to find cure for this terrible disease

June 28 2019
Raising funds to find cure for this terrible disease

A local family are raising funds to help find a cure for severe muscular dystrophy.

by Keri Beckingham
A local family are raising funds to help find a cure for severe muscular dystrophy.
Six-year old Tommy Mikkelson lives in Patchway with his parents Richard and Sharon, and eight-year old sister Susie.  Just before his third birthday, Tommy was diagnosed with Duchenne muscular dystrophy, an X chromosome-linked muscle wasting condition with no known cure which affects almost always boys. Most boys are confined to a wheelchair before they reach their teens, and the condition is 100 per cent fatal, with an average life expectancy of around 27. Some sufferers have been known to live into their 30s and 40s, however in some cases children sadly won’t make it into their teens.
Tommy attends Callicroft Primary School. Although he has physical difficulties, Richard told The Voice that he is coping very well at the moment, and also explained that the family have chosen not to tell Tommy and Susie the full extent of his condition due to the emotional burden it might have.
Richard, who grew up in Filton and works at Asda, said: “Tommy is a bright and articulate boy with a great sense of humour and a lot of determination. He enjoys cars, nature and Lego, which he is very good at.
“It was important to us that he went to mainstream school as we think it's very important that his life is as 'normal' as possible. Going to school with fully able-bodied children does come with issues as he can't run as fast or play as rough as the other boys, but he still manages to be included.
“Since Tommy started steroids three years ago he has gained a lot of strength and we have seen many changes in his physical ability. To see your six- year old son jump with two feet off the floor for the first time is an amazing thing, something we never thought we would see. However, steroids also come with emotional/behavioural issues which can be difficult to manage.
"We are well aware that he will reach what they call a plateau in the next few years and his ability will decline dramatically, first losing his ability to walk and then his upper body strength.
“It’s so hard listening to Tommy tell you about what he will do when he is older, knowing unless there’s a miracle that this will never happen. We spend our days controlling information which is very difficult in the age of the internet, especially as Susie is very smart and very internet savvy. "
Richard also told The Voice that Tommy currently needs help with getting dressed/undressed, using the toilet and any type of steps. Although he can walk very short distances, he has a manual wheelchair for anything else.
In addition, Richard said that Tommy’s condition means that it is difficult for him to take part in soft-play birthday parties with his friends. 
On Thursday July 11, Richard, his dad Dave (who is well known in the Filton area as chair of the community garden) and brother Chris will be setting off on a sponsored walk from Ashton Gate to St Mary's stadium in Southampton to raise money for Action Duchenne, a charity that funds research into a cure for Duchenne muscular dystrophy.  They have chosen the route, which covers a distance of 79 miles, due to the 79 missing exons in the dystrophin gene which causes the condition. They also have the backing of Muscular Dystrophy UK, who are supplying them with t-shirts.
This is the family’s second attempt at fundraising for Tommy, after they previously raised £10,000 for the power chair he will need in the future.
Commenting on the walk, Richard said: “It's nice to feel you are doing something for the cause, funding important gene therapy trials that could one day see a cure for this condition which robs young men and their families of a life we take for granted. I’m especially looking forward to taking on the challenge with my dad and my brother who always back me up.
“Our family and friends have been a huge support, and we are extremely grateful for all they have done for us.”
Richard, Dave and Chris are hoping to raise £1,000, and at the time of going to print they had raised £760. To find out more about Tommy and Richard’s fundraising, visit their Just Giving Page: www.justgiving.com/fundraising/mikkelson