Sukhi had Myotubular (centronuclear) myopathy which is a rare and devastating muscle weakness, affecting mainly boys, from birth. It severely affects the muscles used to swallow and breathe. These babies & children are at a constant risk of dying, and usually from complications due to simple colds and coughs from which they are literally too weak to recover. There is no public funding available to Myotubular Trust for this rare condition - the research they have funded is all thanks to the support of those living with the condition & their families, friends and colleagues. They simply wouldn't be able to work towards finding a treatment without our help.The Trust has the backing of the most eminent researchers in the field. "Money is absolutely required to fund research...this is where charities like Myotubular Trust have great value. It takes enthusiastic people to bring things ahead of schedule", Professor Francesco Muntoni, Myotubular Trust Scientific Advisor. Please help us to support them.