Hi everyone. Unfortunately our son, Eden, has been diagnosed with Limb Girdle Muscular Dystrophy, a rare and progressive genetic condition that gradually weakens the muscles he needs most to live a full, independent life. Like any parent, hearing those words shattered our world. Eden is a happy boy who loves to play football and is full of potential, and watching him face a condition he never asked for is something that has completely broke us.

There is hope. A gene therapy treatment exists that targets the root cause of Eden’s condition, offering the possibility of slowing or stopping the progression of the disease. This treatment is currently in the clinical trial stage, and patients have already been dosed. However without funding these trials can’t continue.

Time is critical and the sooner Eden gets this treatment the greater chance at a better quality of life he has.

As parents we would do anything to protect our son and give him the life he deserves. Every donation and share brings us closer to getting this treatment for Eden and we are honestly so grateful to anyone who can help.