14-year-old Alex Hunt, from Ainsdale in Merseyside, was diagnosed with Becker Muscular Dystrophy when he was 12 years old. Alex is a football fanatic who supports Liverpool FC and loves playing his favourite FIFA 18 computer game.
Alex’s father David said:
It was apparent from quite a young age that Alex wasn’t as ‘sporty’ or as able as many of his friends, but he still managed to play for a local team. However, as time went on it became more difficult for him to play, and he often complained of pain, particularly in his legs. Even on walks in the park he would often have to stop, and was clearly in pain. That was when we sought medical advice, which ultimately led to his diagnosis at Alder Hey hospital in Liverpool.
Alex always puts a brave face on his condition, but I know he was devastated when he had to give up playing football for his team. He also finds it hard that he can’t chase or run with his 4-year-old sister as he would like to.
We’ve been very lucky to have had great support from Alex’s medical team, his football team (he can still manage a short kick about on good days), and his school; they were able to make sure all his lessons this year are on the ground floor.
Knowing he has had to give up on his passion of playing football has been devastating for us as parents to see and to help him deal with. It is also the hardest thing for any parent to see your child in pain, and know there is nothing you can do to help or take the hurt away. The support of Muscular Dystrophy UK has been so helpful to all of the family.”
Alex is currently in a process of trial and error, to find a drug that helps with pain relief. Sadly, so far the side affects have outweighed any benefit. His constant discomfort and pain, and reduced mobility, are proving really hard to deal with as most of his friends are getting bigger and stronger.
David, Alex’s father, decided to get involved with supporting Muscular Dystrophy UK after he became aware of the charity through their website and their subsequent support for Alex – the charity helped enormously with emotional support, as well as information about the condition, and what support is available, and that Alex is entitled to.
My first fundraising event was to run the Mersey Tunnel 10k in October 2017 which, being a non-runner, was a real challenge. With some great support from friends, family and work colleagues I managed to raise an incredible £2,184. This has spurred me on to do more and now myself and a group of friends are taking on the Great North Run in 2018 to raise more funds for research. We are hoping to reach a £6,000 fundraising target.”
David has pledged his commitment to Muscular Dystrophy UK by setting up a Family Fund in support of Alex – aptly named Alex’s A-Team – which will also be supported by many of David’s own family, friends and work colleagues.
It has been dark at times for all of us, but knowing that there are so many research projects underway, that could provide treatments and a cure that Alex could benefit from, along with others with the same condition, is really uplifting. Knowing also that you are not alone, and that there is tremendous support out there for Alex, from friends and family, others with the condition, and from Muscular Dystrophy UK makes us all optimistic for the future”.
Alex’s mum Paula said:
Alex is hugely compassionate and knows that there are many people with Muscular Dystrophy, so he’s always been keen to raise money to help fund research into the condition. I think that knowing he has such support from his A Team will help him get through the darker moments”.
How you can help:
Setting up a family fund like Alex’s A-Team is a great way to fundraise for Muscular Dystrophy UK to keep our vital research moving forward. Find out more about our family funds.