A DAD is in a race against time to raise £10,000 so that he can leave the army and spend precious time with his three-year-old son who has been diagnosed with a cruel life-limiting condition.
John Paul Hopkins and fiancé Demi, of Kinmel Bay, were devastated to be told by doctors at Alder Hey Children’s Hospital that their child Rory suffers from Duchenne muscular dystrophy. He had become lethargic and would fall over regularly, but his parents did not think it was a serious problem until a blood test at Glan Clwyd Hospital found abnormally high creatine kinase levels.
A series of hospital tests confirmed the result in May, on what the Armed Forces family now call D-Day, or diagnosis day, that Rory is expected to lose the ability to walk before he is 13 and will likely not live beyond his 20th birthday.
“At first Demi and I didn’t know what Duchenne was, so we went home and Googled it to see the worst case scenario, which was heartbreaking to say the least,” said Mr Hopkins, a physical training instructor in the Royal Welsh 1st Battalion.
“It was very emotional to hear that about Rory and with time being limited I want to get out of the military.”
Prior to the diagnosis, the 30-year-old had committed to 10 years’ service after borrowing £10,000 from the Forces Help to Buy scheme, which enables serving personnel to take out an interest-free loan of up to 50 per cent of their salary and pay it back in monthly instalments. The commitment means that Mr Hopkins could spend more than 200 days a year away from his family home, currently based in Tidworth, Wiltshire.
Welfare officers for the Royal Welsh have offered the desperate father a six-month posting at the TA Centre in Colwyn Bay, but he says this is “a short-term fix to a long-term problem”.
He has sought advice from Armed Forces administrators, however he believes his best chance of escaping the predicament is to set up a GoFundMe page.
“I don’t have the ability to pay off £10,000 in one go that would enable me to sign off,” he said.
“With time being limited, we want to make special memories with Rory, with his mum and dad around him. But with me in the military, that is pretty much impossible. My biggest worry is not being able to come home, and all the responsibility will fall onto my fiancé.
“Rory is a very happy go lucky child, we say he is a full-time over. He loves nothing more than sand, water and messy play. Some days are good, some are bad; it is an emotional rollercoaster, but we have got the support of our family.
“If I’m able to leave the military it would mean we can spend more of those times together.”
There is currently no cure for Duchenne, caused by a mutation on the dystrophin gene that protects muscles from wear damage. It eventually affects all the muscles in the body, including the heart and lungs.
The condition almost always affects boys, about one in 3,500 globally, or 20,000 children every year, and is typically diagnosed in childhood between the age of three and six.
Clinical trials are being carried out to discover whether medical treatments are possible for children who are diagnosed with the condition, though this can take years due to the need to recruit enough participants and giving the treatment over a suitable period.
Mr Hopkins said Rory has “a very tight-knit team of people” providing paediatrician advice at the Duchenne muscular dystrophy steroid clinic at Alder Hey in Liverpool, as well as a neuromuscular care advisor at Glan Clwyd Hospital and a physiotherapist at the Conwy Child Development Centre in Llandudno.
Once Rory loses the ability to walk, he will receive steroid treatment that will help to manage the decline of muscular function into his teenage years.
“There are clinical trials to extend the lifespan of children with Duchenne, so there is a slight glimmer of hope,” said Mr Hopkins.
To donate to the fundraiser, click here.
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