My cousin Archie is polite, clever, and has a smile that will melt your heart, a wonderful boy, so why is each day a battle?
In 2008, at just three years old he was diagnosed with Duchenne muscular dystrophy. This is a severe muscle wasting disease, which leads to paralysis and significantly shortened life. It impacts his daily life and means he now finds it difficult to do some things we often take for granted: walk up a flight of stairs, run, play football with his friends.
Duchenne muscular dystrophy is caused by a genetic mutation on the ‘X’ chromosome which prevents the body from producing a vital muscle protein, dystrophin, which is needed to build and repair muscles. Most are diagnosed around the age of five, and are usually in a wheelchair by twelve. During their teens it causes severe health problems as their heart and lungs weaken. Very few sufferers of this disease live to see their thirtieth birthday.
Although there is no cure, there is a variety of support, and a treatment that can slow down the deterioration called Translarna. Archie and his family fought hard over the last two years to get this drug green lighted in the UK, campaigning, holding charity events, being sponsored in both the London and the New York Marathons, travelling the country spreading awareness, and speaking to the Prime Minister, David Cameron.
Along the way they have been met with huge support from friends, family, families in similar situations, as well as from an array of public figures such as Jack Wilshere, who still calls to check in on Archie every few weeks.
There is one word I especially associate with Archie and his family and that is strong. They have supported each other and helped each other get through the last few years, and no doubt they will continue to do so going forward. They have had some extremely hard times, especially as Archie becomes increasingly aware of the impact of his condition and begins to notice significant changes in his physical ability. He has, however, stayed amazingly strong and continued to speak on television, talk shows, and wherever he can to spread awareness of his condition.
Leyton, Archie’s older brother is extremely loving and supportive and always there when his brother needs him. He plays a key role in ensuring normality within Hill family life by acting like any other teenage older brother, playing videogames, football and teasing Archie.
The next fight to be fought is to make the process of approval for drugs such as Translarna faster, so that those affected can get access to any newly emerging drugs as soon as possible because time is key when muscles are constantly deteriorating. Time is not on their side.
I am not asking for money, this fight is not going to be solved by cash alone (although it never hurts so if you are interested in donating please go to http://www.action4archie.com/). This fight is about raising awareness and getting information out there about this disease, its effects, and of the fight happening right now to try to make the lives of those affected just that little bit better so that future Duchenne sufferers never have to go through what the Hill family have gone through.
You can follow Archie’s story and keep posted on what’s happening in the Hill family’s fight by checking out: www.action4archie.com or check out the Instagram: https://www.instagram.com/action4archie/
You can learn more about Muscular Dystrophy at: http://www.musculardystrophyuk.org/