Leon is currently 11 years old, Leon was diagnosed on the 17th August 2011 with duchenne muscular dystrophy. 

What is Duchennes?

Duchenne muscular dystrophy is a fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births.

Because the Duchenne gene is found on the X-chromosome, it primarily affects boys with less than 1% of those with Duchenne being female. However, it occurs across all races and cultures.

Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin. Because dystrophin is absent, the muscle cells are easily damaged. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs. Young men with Duchenne typically live into their late twenties. To date there is no cure. 

Leon's story..

leon didn't hit childhood milestones like he should have which set alarm bells and after many blood tests it was confirmed Leon has duchennes, the months following this became a blur, the timeline starts with hope and the desperate attempt to cram in as many charity events to raise as much as possible, because the dr says hopefully with enough research done in 2 years there will be a cure.. 

So in 2012 I set up team Leon and we started fundraising..

3 years of hope and charity events and you soon realise 2 years was possibly a way to help comfort you at the time of diagnosis.

31/7/14 was the day Leon found out the full extent of his condition, whilst my mum told Leon and watching the emotions and thoughts process his face, the love and compassion between two people amplified unconditional love. Leon has an admirable personality. His initial response after questioning how much money we needed to raise to save him was "I don't know how to tell people. I don't want my friends to be sad and miss me" even through his fear and questions of dying his main concern was others and how him not being here any more may effect them. Leon may only be 12 but we are all in awe of his maturity, his endearing smile and his contiguous giggle. 

Forward 2 more years after hitting the stage of grief, hate & anger and I am now planning the biggest event i have done to date. Ready to start fundraising again. Knowing we may not see a cure for Leon but hoping nobody has to go through what our Leon has in the future. 

We have done skydives, fire walks, runs, pub quiz & the list goes on. Now we are trekking Kilimanjaro sept 21- 1 October 2017

This extensive, physical and emotional condition exists and is pervasive, don't shy away from this page thinking someone else may donate, please help us reach our goal.

Thanks for taking the time to visit my JustGiving page.