Damo's Bday 016


Our beautiful son Leo is 8.  He has Duchenne Muscular Dystrophy,  a devastating condition that affects mainly boys and causes muscle weakness, heart failure and premature death.  There is currently no effective treatment and children become progressively weaker as time goes on.  As we watch Leo battle with this terrible illness, we hope that soon there will be a breakthrough.  New medications are being developed that can halt the relentless progression of this horrible disease.  Unfortunately these new drugs are very difficult to access, and are available only to a small number of boys who are taking part in clinical trials.  Leo has been lucky, and is currently taking part in a clinical trial for the new drug Ataluren.  Unfortunately, it means travelling thousands of miles from our home in England every 8 weeks, all the way to Boston Children’s Hospital (USA). 

At Team Leo we have a dream.  We believe that every child with Duchenne, should have the chance to try these promising new medications as soon as possible and without having to travel thousands of miles.  We are raising funds to make sure that happens.  By funding companies that are developing promising new medications, and by financially supporting organizations that continue to campaign for early access to new treatments, we hope to make that dream a reality.  Thank you for all your kind and generous donations.

Leave a Reply