Harry is twelve years old and has congenital muscular dystrophy merosin negative. His family set up Harry’s Research Fund to raise awareness and funds to back research into Harry’s condition.
Harry was born at 38 weeks by caesarean section and as far as his parents, Debbie and Kevin were concerned, Debbie had given birth to a healthy baby boy weighing 7lb 8oz.
However, seven weeks later, blood tests taken from Harry’s heel prick at five days old revealed that he had a very high creatine phosphokinase (CPK) level in his blood. Debbie and Kevin were then given the devastating news that Harry may have a condition called Duchenne muscular dystrophy.
The family noticed that Harry was not progressing as quickly as other babies his age, and from six months he was in and out of hospital with constant chest infections and pneumonia. A muscle biopsy was taken when he was eight months old and at 14 months it was confirmed that Harry actually had congenital muscular dystrophy merosin negative.
Debbie and Kevin said:
“Harry is unable to crawl, stand or walk, has a very weak upper trunk, and has curvature of the spine. Putting all this aside, Harry has a very strong personality and is very bright, clever and extremely funny – what lack of movement he has, he makes up in personality and he lights up our days.
“As a family we value the support we have received from Muscular Dystrophy UK as they have helped us as a family when Harry was younger with schooling, giving advice and generally being there if we feel we need their help. We decided to get involved in fundraising to help raise awareness of Harry’s condition and to raise funds to help fund research into possible treatments.”
Harry is currently doing very well in health and in main stream school. He is very clever for his age and enjoys school, his passion is anything to do with IT, the latest technologies and he loves playing on his Xbox with his friends.
The family have set up Harry’s Research Fund to raise funds to support the research work of Dr Susan Brown. To date the family have raised funds through supermarket bag packing and collections and organising a birthday party with donations in place of presents. At the end of September a group of eight including Harry’s eighteen year old sister Holly are taking part in a skydive for Harry’s Research Fund.
Setting up a family fund like Harry’s Research Fund is a great way to fundraise for Muscular Dystrophy UK to keep our vital research moving forward. Find out more about our family funds.