Hugo Hart is a typical 4 year old boy from Lincoln. Hugo has two brothers, Riley who is 5 and Jasper who is 2. Both myself and my husband, Hugo’s Mummy and Daddy, work full time as teaching assistants in order to provide for the family. As working parents raising 3 young boys, life is very challenging. Hugo attends Hartsholme Academy in Lincoln with his brothers, and he absolutely loves school. He loves his puzzles and books and playing with his friends, like any other child.
On the 6th June 2016, we were given devastating news about Hugo, which will affect our entire family forever. Hugo was diagnosed with Duchenne Muscular Dystrophy. After being led to believe that Hugo had Hypermobility Syndrome for several months, this was an unexpected shock, one which has crushed our family, and has affected everyone who knows him. Hugo is a very happy, kind hearted, lovable character. Everyone who meets Hugo falls in love with his beautiful personality.
Duchenne Muscular Dystrophy (DMD) is an incurable, muscle-wasting disease. It is caused by the lack of a protein called dystrophin. There are only 2500 boys in the UK with this condition. It is a serious condition which causes progressive muscle weakness. Children with DMD have difficulty walking, running, jumping, standing up and climbing stairs. They also have difficulty communicating and usually have learning difficulties. By the age of 8-10, boys with DMD are wheelchair bound as the condition develops and they lose the ability to walk. By their mid-teens, DMD sufferers develop cardiomyopathy, which affects the heart muscles. By their late teens, they will start to have breathing difficulties. Once the heart and respiratory muscles are damaged, DMD becomes life threatening. People with DMD die in their early 20s from heart or respiratory failure. It is a genetic condition so Hugo was born this way. Unfortunately his condition has been missed by various health professionals for a long time and we have only discovered he has this hideous condition at the age of 4 years old.
There is no cure for this condition, and the later stages are a truly terrible time. Currently, Hugo has begun the deterioration process. He is already losing the strength in his legs. He already displays a strong Gowers Sign (having to ‘walk’ his hands up his legs in order to stand up) and is struggling with everyday mobility.
Hugo’s paediatrician has said that his maximum life expectancy would be 25. He will be wheelchair dependent by the age of 10, if not sooner.
As a family, this is absolutely heartbreaking. We, as parents, want to ensure Hugo has the best quality of life and is able to enjoy his time with us. We want to create amazing memories for him, and his brothers. Hugo is very close to his brothers and the impact that this will have on them is huge. As a family on relatively low incomes, and 3 children to support, we are hoping to raise funds to use on providing Hugo with life experiences that he can enjoy with his family.
We would appreciate any kind of donation to go towards providing Hugo with the life he deserves. As a family, we have a very difficult journey ahead, but our focus as parents is to make his short life the very best it can be. There are also emerging new treatments available in America and Europe which would not be funded through the NHS so we are hoping to raise funds towards this. We will do all it takes to increase the quality of life for our beautiful boy.
Katie, Danny, Hugo, Riley and Jasper xxxxxx