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When our son Jed was born, we noticed that he had "floppy" limbs and poor muscle development. Initially, we were told that he had myopathy and that over time, his development would match that of his peers. When he was 8 years of age and this wasn't the case, Jed had a muscle biopsy which confirmed the diagnosis of Ullrich Congenital Muscular Dystrophy. This is the rarest form of Muscular Dystrophy (only 1 in every million people are affected), with no cure or treatment. It is a progressive muscle wasting disease which leads to increasingly severe disability.

"Jed is an amazing boy and despite the challenges facing him in life, he lets nothing deter him. His strength of character is awesome and is known throughout his circle of friends for always having a smile on his face. Always the funny man, he approaches life head on and lets nothing stand in his way"

The aim of this page is  to raise awareness into Jed's condition and money for research that is currently taking place. Along with three other families who are also affected by this rare condition, we have pledged to raise £50,000 a year for the next three years. This money that we hope to raise will support a minimum of three projects, all looking to find a cure for this dreadful muscle wasting disease.