Man dies four days after his cousin with the same condition
We had lost my nephew on the Friday, on June 3, to the same condition and he [Luke] went downhill from the Monday. He was fine in the morning and then come the afternoon, he just wasn’t himself. With the loss of my nephew as well, it was just shock and stress. He was well, it was just all of a sudden he became ill
Luke’s mother, Judy
A YOUNG man who lived with a muscle degenerative condition has died just four days after his cousin and 11 years after his older brother, both of whom had the same illness.
Luke Parker, who had Duchenne muscular dystrophy, was 26 when he died on June 8 after spending two days in hospital.
Luke’s mother Judy said her son’s death, as well as the death of her nephew John had come as a “shock” to the family. Judy, 53, also lost her son Paul to Duchenne muscular dystrophy in 2011, and also had a brother who lived with the condition. Both her sons began using wheelchairs once they were around nine or 10 years old.
“It came as a shock,” said Judy of her son’s death. “We had lost my nephew on the Friday, on June 3, to the same condition and he [Luke] went downhill from the Monday. He was fine in the morning and then come the afternoon, he just wasn’t himself. With the loss of my nephew as well, it was just shock and stress. He was well, it was just all of a sudden he became ill.”
Luke, from Ely, Cardiff, was taken to University Hospital Wales in Cardiff on Monday, June 6, and died on Wednesday, June 8. Judy’s nephew, John Morgan, died on June 3, aged 23.
Duchenne muscular dystrophy (DMD) is an inherited genetic condition characterised by progressive muscular degeneration as cells break down and die. It is one of the most common and severe forms of muscular dystrophy, usually affecting boys in early childhood. Those who have the condition usually only live to their 20s or early 30s.
Around 100 boys are born with DMD each year in the UK and there are about 2,500 people who live with the condition at any one time. Luke was diagnosed with DMD when he was 10 days old, while Paul was diagnosed with the condition before he was born.
“I’m a carrier for Duchenne. My mum was a carrier, I had a brother with the same condition,” said Judy.
She said Luke took medication to “keep him healthy” and for his heart.
She added: “He wasn’t on that much medication. It was just to help his system, help to fight any infections.” Luke attended Riverbank School in Ely before going to what is now Ysgol Y Deri in Penarth.
Describing her son as “funny”, Judy said: “He used to watch a lot of programmes on YouTube and he could tell you, with the car programmes and everything, whether they’re doing it right, whether they’re doing it wrong. After he watched the programmes, he’d go to my neighbour’s and go, ‘maybe this is what’s wrong with the car.’ He was right – it was those sorts
of things. He could tell you what to do with your car. He was pretty good like that.”
A fundraiser has been set up by a family member to raise money for a funeral for Luke. Judy said she was waiting to hear back from the Department of Work and Pensions about any money available to pay for his funeral.
Judy described her son Paul, whom she lost to DMD in 2011, as a “character, just like his brother, same as Luke”. She said: “[He was] really funny, same as any other young adult. He had the same temperament as Luke, I suppose – comical.”
Speaking about the condition, she added: “I don’t think there’s a lot of people that know about the condition and how it affects their lives and the family’s life as well. I don’t think there’s a lot of information out there. I know there are other family members that have had the condition, but with their condition, some people are born with it, they don’t know about it.
“It just hits some people and they don’t even know. It has hit a few people, as far as I know, [and] they didn’t even know about the condition. It could hit them later on in life. I suppose it affects other families differently.”
Judy said her sons’ condition progressed with age: “Obviously, they had the condition and later on then it progresses to a certain age, from a certain age, more advanced.”
John, also from Cardiff, had more than 4,300 followers on his Facebook page where he posted about his admiration for the emergency services and the military and asked for followers to help him collect military caps and badges.
Hundreds of messages of condolence to his parents were posted following his death.