MUM HOPING TO HELP ALL BOYS WITH LIFE-LIMITING CONDITION
T HE family of a little boy with a life-limiting muscle-wasting disease are channelling their devastation by spreading awareness about the condition. Harvey Doak, five, from Bridgend, was diagnosed with Duchenne Muscular Dystrophy (DMD) last year and, while he is able to walk at the moment, he faces living the rest of his life in a wheelchair.
DMD is one of the most common and severe forms of muscular dystrophy and usually affects boys in early childhood.
It is normally caused by mutations in the genes responsible for the structure and functioning of a person’s muscles.
The mutations cause changes in the muscle fibres that interfere with the ability of muscles to function, which over time causes increasing disability.
Men with DMD will usually only live into their 20s or 30s.
Harvey’s mother Kirstie Smith, 26, said it was “devastating” to find out that her son had a lifelimiting disease.
She said: “He was diagnosed in September 2016 and he first started having tests in January 2016.
“His paediatrician noticed he was flimsy and when the blood test came back his CK levels were really high. “Another test came back even higher. “A neurologist looked into it and he was sent to Great Ormond Street Hospital and that’s when the diagnosis came back.
“We were devastated, really, but we have been told we’re taking it really well.
“We’d rather be positive about it and get more people knowing about the condition.”
Harvey is currently using a wheelchair to get around Ogmore Vale Primary School due to the pain in his muscles, which can cause him to fall over.
He also finds it hard to get up and down stairs, doesn’t run around and is up on his tip toes a lot because of the pain, as well as sleeping in splints to stop his legs from turning.
Mother-of-three Kirstie said she believed he would be in a wheelchair full time by the time he is 12 and will also suffer heart and lung problems.
She added: “Harvey is always smiling and always happy. He’s like a normal five-year-old and he has his moments.
“For the time being he doesn’t know what is happening to him, really. He knows he has bad legs but when he gets older we will help ease him through it and let him know what is happening.”
Kirstie and her family are now hoping to spread awareness about DMD and have set up a fundraising page to sell wristbands, the proceeds of which go towards Muscular Dystrophy UK and the Starlight charity, which grants wishes for children.
She said: “There are other boys in Wales this is happening to. Not many people know what this condition is and there are all sorts of musclewasting conditions out there but Duchenne is lifelimiting.
“We’re hoping if it gets out there a bit more and in the limelight we might actually get a cure quicker, because testing is being done all the time.”
For more information about Harvey’s condition or to make a donation visit the Harvey’s Journey Facebook page.