Woodhall Spa great-grandparents: '˜Help raise funds for our little hero'
Ray and Pat Darby, who live in Woodhall Spa, are determined to help Hugo Hart who suffers from Duchenne Muscular Dystrophy.
He is unlikely to live beyond the age of 25.
There is no known cure for the condition but Mr and Mrs Darby believe the efforts of family and friends will fund vital research and provide Hugo with the best possible quality of life.
Mr Darby said: “Hugo is a typical four-year-old. He’s already been through so much.
“It is heartbreaking but everyone who meets him falls in love with him.
“Whatever is happening and no matter how much pain he’s in, he always has a smile on his face.
“He brightens up so any people’s lives. He’s our little hero.”
Hugo lives with his mum and dad and two brothers in Lincoln. His parents are teaching assistants and Mr and Mrs Darby are full of admiration for their approach to daily life.
Mrs Darby said: “Having three young children would be a challenge for anyone but, although Hugo takes up more of their time, they never complain.”
Hugo attends Hartsholme Academy with his brothers and absolutely loves school. He likes puzzles and books and playing with his friends,
Initially, the family believed he was suffering from Hypermobility Sydrome but, last June, he was diagnosed with the Duchenne Muscular Dystrophy - a muscle-wasting disease.
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 and 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.
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.
Mr and Mrs Darby will be outside Budgens Supermarket in Woodhall Spa from 9am this Friday and Saturday collecting food donations for hampers, which will then be raffled off at a major event in Woodhall later in the year.
That event is the ‘617 Squadron Salute Ball’ which will be held at the National Golf Centre on Saturday, July 15. It will feature Brandyn Shaw. Tickets for the ball are available from www.palais-de-danse.co.uk.
Mr Darby added: “We would appreciate any kind of donation to go towards providing Hugo with the life he deserves.”
○Family and friends have already raised around £17,000. More information is available from www.gofundme.com/Hugohart