Deletions 46 52 Need 53 or 22 46 I live across the pond in the United Kingdom in a City named Manchester I live at home with my mother. My father passed away in March 2012. I have Duchenne Muscular Dystrophy I'm 26 years old. I'm currently unemployed however I spend most of my days fundraising and raising awareness of Duchenne. Even though the current trial won't directly affect me the next one will impact my life completely. More delays to the current trial mean waiting even longer to get to the next trial -it's time that we do not have.
I have hopes and aspirations more than ever now that I've met a woman, I want to start a family in the future which I may not have the opportunity if something happens to me while waiting for these delays and I need to live a longer and healthier life. I feel as though I haven't had the best start to life and most of this is due to Duchenne, my parents made my life as easy as possible but having a child with a physical disablement is no picnic especially when that disability is Duchenne. I've seen my legs and arms get weaker and weaker. My heart muscle and respiratory has got weaker and weaker. I have a weak swallow and I have lost the ability to consume food so I'm fed though the embarrassment of a tube which makes dinner time unkind.
Many of my friends living with Duchenne have died and living with this illness can cause Posttraumatic stress disorder just like in the armed forces when a friend dies and living around such dangerous circumstances.
Time is now to push forward stop the delays it's not making things better, its making situations worse and killing more children and young adults!