Parents’ plea over Sunderland toddler’s incurable disease

Rob and Caroline Calvert  with their son William,  who has just been diagnosed with Duchenne muscular dystrophy.
Rob and Caroline Calvert with their son William, who has just been diagnosed with Duchenne muscular dystrophy.
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The parents of a Sunderland toddler living with a genetic disorder which will cut short his life have launched a fundraising drive to support more research into the condition.

William Calvert may not live long enough to see his 30th birthday after being diagnosed with Duchenne muscular dystrophy (DMD), an incurable muscle-wasting disease.

Rob and Caroline Calvert  with their son William,  who has just been diagnosed with Duchenne muscular dystrophy.

Rob and Caroline Calvert with their son William, who has just been diagnosed with Duchenne muscular dystrophy.

Parents Caroline and Robert Calvert, of Craigshaw Square, Hylton Castle, say when they see their only child play, they still cannot believe that in less than 10 years he will be wheelchair-bound and highly dependant on them.

The three-year-old, who attends Castletown Primary, was diagnosed after his parents took him to a walk-in centre last month after discovering a lump in his neck.

Further tests revealed the genetic disorder, which was confirmed by doctors on December 18.

Since then his parents have set about raising £5,000 to create a charity which will raise funds to support research into the condition.

Mum Caroline, 28, a secondary school teacher, said: “There was nothing wrong with his liver, but because the count was so high they wanted to investigate further.

“On December 14, they told us that they thought it was muscular dystrophy – and a few days later they confirmed it.

“There are just no words to describe how we both feel knowing our son’s future has been taken away from him.

“You look at him and he is so happy – it’s hard to imagine there’s anything wrong with him. Instead of being excited for the future, we are both now scared.

“The whole family and our neighbours are just devastated.”

Dad Rob, 28, a Nissan worker, added: “When we were finding out more and more about the condition, it was just so upsetting.

“The fact is my son has had his life chances taken away from him. It’s not the wheelchair, if the worst he was going to get was to have to be in a wheelchair we could live with that.

“It’s what will come after that, which is heartbreaking.

“The minute we were told, our lives changed forever.”

The youngster is currently being looked after by medics at the Centre of Life in Newcastle, where research into the condition is also being carried out.

The couple now hope to raise not only awareness of the condition but also funds so research can continue into the disorder in the hope it can help prolong and improve the lives of children like William.

Since the couple launched a JustGiving page, almost £3,500 has been raised towards the total.

His mum said: “We are both quite positive people and we can’t just sit back and do nothing.

“Last year, the EU granted the conditional approval for the use of Translana – a drug which can potentially slow down the process of the condition.

“It can keep children walking longer but it can only be taken by those who can still walk.

“The drug isn’t available here so the more research that can be done the better and there needs to be more pressure put on those who make the decisions.

“Once a child loses the use of their legs through this condition there is no going back – time is really being wasted for a lot of children.”

As well as helping the couple to raise the funds needed to support research into the condition, they are also calling on people to sign a petition to have the drug funded for those living with the condition.

A link to the petition can be found by visiting a Facebook Page set up to raise awareness of William’s plight called Williams Battle against Muscular Dystrophy.

Anyone who would like to make a donation to the fund can do so via the JustGiving page HERE.