Belfast Telegraph

Northern Ireland mum cuts off hair to raise money for fight against son's Duchenne muscular dystrophy

Mum Laura McCorriston with husband Paul, son Callum and daughter Caitlin
Mum Laura McCorriston with husband Paul, son Callum and daughter Caitlin
Laura before her haircut
Laura after her haircut
Claire McNeilly

By Claire McNeilly

A mother has lopped off her long locks in order to raise money for research into Duchenne muscular dystrophy (DMD).

Laura McCorriston's decision to cut off her hair has raised almost £1,700, and is the family's latest fundraiser for Laura's 10-year-old son Callum.

In February 2011 Callum, who's in P6 at Termoncanice Primary School, Limavady, was diagnosed with DMD, a life-limiting, muscle-wasting illness for which there is currently no cure.

'Team Callum' is made up of Laura (38), a full-time carer, her credit controller husband Paul (35), their daughter Caitlin and Callum himself, as well as their extended family and friends in the Limavady area.

It has been raising awareness and funds for the charity Muscular Dystrophy UK and Laura said they have raised around £35,000 since 'Team Callum' was set up, with skydives, abseils and holding events such as fun days and raffles.

Laura explained that "it was very hard to take on board" when she was told by their paediatrician that Callum had been diagnosed with a spontaneous mutation of Duchenne muscular dystrophy.

"He was about 19 months old and he wasn't walking or attempting to walk," she said.

"I wasn't overly concerned but the health visitor said she wanted to refer him for physio to try and strengthen his legs.

"After a couple of months he was referred to a paediatrician who got some bloods taken, and then the paediatrician called to ask to come out to the house to speak to us, so we knew then that there was something badly wrong."

The paediatrician visited the family home to explain the diagnosis and, thanks to "a fantastic family support network" they're getting on with life.

Callum now undergoes physiotherapy twice a day and is taking the steroid Deflazacort.

He also takes Translarna medication after his mum spearheaded a campaign to make sure it was approved for use in Northern Ireland.

"Callum fitted the criteria for Translarna - the first ever treatment for Duchenne - which is mutation dependant and only works for 13% of the boys," Laura said.

"Thankfully, it happened to be the mutation that Callum has so, after a long fight he got access to that when the NHS decided to fund it and he's been on that treatment for three years."

DMD is a muscle-wasting disease and between the ages of 10 and 12 boys may lose the ability to walk completely and become wheelchair-dependant.

In later teenage years breathing and the heart can be affected and life expectancy for boys with DMD is in the 20s.

Laura said Callum, who is "still mobile and active", has a wheelchair for long distances "to get around at school".

She added: "Callum is starting to realise that he's not like other children.

"But he doesn't know the prognosis and I intend to keep it like that for as long as possible."

To cope with the illness, Laura said the family "just threw ourselves into fundraising because basically that was all we could do".

Cutting off her hair was, nevertheless, a scary step.

Last October Laura said she "set up a fundraising page without telling my husband or children so that I couldn't back out.

"We've done so much fundraising in the past but this was different," she explained.

"But it's only hair. It'll grow back."

"Callum's muscles won't grow back, but my hair will," she added.

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