Support us: Donate to Team Dex here
In February 2017 Dexter, who had just turned 4, was diagnosed with Duchenne muscular dystrophy, a severe muscling wasting condition. We took Dexter to his GP the October previous as he was slightly behind his peers physically. Aside from that Dexter had met all his “milestones” as a baby and had always been a very healthy, bright boy; bursting full of life, so his diagnosis came as a massive shock to all his family and we were absolutely devastated.
The doctors explained that Dexter had a mutation in his DMD gene and that his body was therefore unable to make dystrophin, a protein that helps to prevent muscle damage. Without this essential protein a boy with Duchenne’s muscles will slowly be replaced by fat and scar tissue and boys on average lose the ability to walk by 10. As the boys age the lack of dystrophin affects their arms, their lungs, so they need assisted breathing, and their heart. Without treatment a boy’s life expectancy would only be 20 years old. Thankfully steroid treatment, which Dexter is taking, prolongs the boys’ life expectancy and also can prolong their ability to walk, but this comes with some nasty side effects.
This is just not enough for Dexter and for all the other boys suffering from Duchenne (250,000 boys worldwide, 2500 in the UK). So this is why we have created Team Dex, with Duchenne UK, a fund to raise money to go directly to the research needed to treat, cure and end Duchenne muscular dystrophy. The research surrounding Duchenne is incredible and fills us with hope for the future. The cure is getting closer and closer but every year matters for our boys. They need it now so that they can have the full, long life they deserve.
Dexter is our hero, he has dealt with everything better than we have and he doesn’t let anything get him down. He is a happy, confident little boy and so full of life. He loves music, dancing, swimming, magic, playing pranks, lego, drawing and he is especially talented at computer games. Super Mario is his favourite. He’s so funny and so loving to all his family and friends. We thank our lucky stars every day that Dexter is in our lives. All we want is for Dexter to be able to have a full, long life where he can do whatever he likes and be whoever he wants to be, with absolutely no restrictions.
You can donate through this page or set up your own event and fundraise for us or with us. We are open to all ideas. Your support means the entire world to us and to Dexter. Together we can end Duchenne and wipe this cruel disease from the face of the planet.
Thank you so much from the bottom of our hearts.
Rachel and Dane (Dexter’s mum and dad)
Donate to Team Dex here.
Published on 31 December 2019Share this articleCategories Family and Friends Funds