This March, whilst the nation went into lockdown, Harry Bowyer was diagnosed with the muscle wasting condition Duchenne Muscular Dystrophy at only six-years-old.
At six, Harry was quite late to be diagnosed with the condition, as most children are identified much earlier in life, and many end up using a wheelchair by their early teens.
Duchenne Muscular Dystrophy (DMD) is caused by the lack of a protein called dystrophin and it causes muscle fibres to break down and be replaced by fibrous or fatty tissue, which causes gradual but progressive muscle weakening.
Both the skeletal and heart muscle are affected, and the vast majority of cases are of boys, with approximately 100 boys born in the UK every year with the disease.
There are approximately 2,500 boys and young men known to have the condition in the UK currently, and the risk of having a child with the disease is roughly 1 in every 3,500-5,000 male births.
Regarding the diagnosis of her son Harry, Samantha Bellegher said: “When we were given the news it felt like everything around us was crumbling and we were falling into a black hole. The hopes for Harry, my partner Daniel and daughter Evie came crashing down and our dreams were replaced with despair, worry and pain. We thought that we would never be happy or find joy in life again.”
But, despite the devastating diagnosis, Harry Bowyer’s family was determined not to be defeated so Samantha shared their on her Facebook page, and raised £500 within five hours.
She said: “Instead of crumbling, we decided to be strong and pull together as a family. In our darkest moments we chose not to let Duchenne define Harry or our family but instead to raise funds and awareness and join the fight to put an end to this cruel disease.”
They have raised £2,000 so far, and have created a go fund me page for Harry, and for charity Muscular Dystrophy UK. The charity aims to unite and support the 70,000 people across the UK with any of the 60 rare and very rare muscle-wasting conditions.
After 60 years, the charity are now facing an unprecedented loss of half of their forecasted fundraising income, equating to £2.8million approximately.
Samantha Bellegher quit her job at a construction company as soon as the family got Harry’s diagnosis in order to focus on her family and subsequent fundraising efforts.
Harry has been on steroid treatments for the last five months with positive results, and the clever, happy and frankly remarkable young boy has not let this diagnosis take the smile off his face.
Samantha said: “We are doing this in the hope that a cure can be found. From the day Harry was born he stole our hearts and we will not let Duchenne Muscular Dystrophy steal him.”
If you would like information or support on muscle-wasting conditions please call the Muscular Dystrophy UK helpline on 0800 652 6532.