At just 2 and a half years old, Henry was diagnosed with Duchenne Muscular Dystrophy (DMD). By far the worst day of our lives and our world as we knew it fell apart. Henry is a fun, loving, affectionate and resilient boy. He loves messy play and being silly with his older brother, Theo.

Duchenne is a rare and life limiting muscle-wasting disease effecting approximately 2,500 people within the UK, whom are mostly boys. It is caused by a mutation in the gene that produces dystrophin – a protein which keeps the cells ‘intact’ and able to repair themselves. Dystrophin is vital for all muscles within the body. It effects the heart, brain and lungs.

The current expectation for people with Duchenne is that they will slowly loose the use of their arms and legs due to their muscles turning into scar tissue, leaving them wheelchair dependent between the ages of 8-12. Their life expectancy is grossly shortened, and they are only expected to live into their 20’s or 30’s. Duchenne causes respiratory and cardiac failure with many boys needing a ventilator to breathe in their later years. There is no cure.

Duchenne UK is a charity whose aim is to support these boys (and girls), by fundraising towards vital research and clinical trials for treatments to help with symptoms, and the possibility of one day finding a cure. As of right now, steroids are the only available treatment within the UK to slow down the progression of the disease (with many associated side effects).

We want to use this platform to raise awareness of DMD and to be able to support Duchenne UK in the fight. To fundraise money towards treatments and research for all the young children and adults living with this horrific condition, which takes away their childhood and chance to lead a normal life.

We realise we may not be able to save Henry, but we may be able to help improve his quality of life, and one day, save future generations from this devastating condition.

Thank you for all your support,

Sarah, James and Theo x