Desperate families in a race to save children
Two heartbroken Inishowen families who are in a race against time to persuade government chiefs to help save their sick children say they won't give up the fight.
Beautiful seven-year-old Tony Lafferty, two-year-old Bobby Lafferty and six-year-old Liam Mooney all have a deadly disease - Duchene Muscular Distrophy - that will leave them wheelchair bound before they reach their teens – unless revolutionary research will help save them.
But despite groundbreaking research being explored at a Newcastle University, health ministers here have refused to help fund the project which could help more than a hundred Irish boys who have the debilitating illness.
Both parents, Karen and Joe Lafferty from Carndonagh and Mary and Jimmy Mooney from Malin, have spent the past two years vigorously campaigning to get the Irish government to make a financial contribution to the UK-based research, because there is none of this kind in Ireland,
The promising clinical trials could reduce the severity of the condition and it could significantly improve quality and length of life for people with the relentless disease.
Clumsy child
Devastated mum Karen said she noticed there was something wrong with Tony when he was at playschool.
She said he seemed to be falling over a lot compared to the other children, but after initial visitors to GPs and pediatricians she was told he was simply a 'clumsy child and nothing can be done for him'.
But Karen said she knew something was wrong and after a third visit to the hospital doctors finally detected a problem in Tony's blood.
It indicated there was severe stress on the muscle tissue.
And it was only when the family went to Dublin back in 2005 Tony's illness was diagnosed and the family were told of the extent of it.
Karen was pregnant at the time with Bobby.
It was a double blow for the family to receive the heart-wrenching news Tony was ill and it was likely her newborn child – Bobby – would also have the life-threatening condition.
She said: "To be told there was nothing for you, that there is no hope for your child.
"You'll just have to watch them die - and then to be told it is the same for your unborn child, that you will watch both of your children die; I cannot explain how that felt.
"And then for the government to turn round and say there is nothing they can do to help this research, well it is just devastating."
Bobby was also diagnosed with the condition.
For the Mooney family, it was a similar story. They too had also noticed Liam was falling a lot and it was during a visit to a Dublin Hospital Liam was diagnosed.
Liam’s dad, who has spent the past two-years learning about the disease, said: “My mother noticed that there was something wrong with Liam.
“We went to Dublin and it was just an absolute shock because we didn’t know anything about it.
“The family was so low at that time, we just had no hope.”
Mary was also pregnant with her second child when the couple found out about Liam.
And, similarly to the Lafferty’s they were told to prepare for the worst – that their second child may also have the condition.
But luckily their son Matthew does not suffer from the fatal illness.
Research
After diagnosis, it wasn’t before long both families found out about the research in Newcastle and set about trying to raise awareness to the Irish government.
Jimmy even took part in a Belfast marathon in a bid to raise awareness and cash for the research.
The peninsula’s North Pole Cycling Club even got on board to help. In total, a whopping 45k euro was raked in.
Jimmy is now hoping he can raise a further 100k for the project.
He added: “We thought that the government could do something to help the plight of these boys.
“Although it is a rare illness it is one of the most common diseases out there
“There are four families in Inishowen, there are three cases in Derry.
“We haven’t got that much of a window of opportunity.
“At the most 12 is optimistic to see their childhood without a wheelchair.
“We need to get something quick.”
The research currently being looked into is based on the administration of a drug which will repair damaged DNA, enabling the production of Dystrophin agaun,
Karen said the revolutionary science could slow or even halt the progression of muscle wasting – which could give patients a chance to live into old age.
If all three peninsula boys are given the treatment they may not be forced to rely on a wheelchair in later life.
Both families are hopeful, with funding, the research will be soon completed and will give renewed hope to children with the terrible illness.
Despite being knocked back by the Irish government, the families now plan to put pressure on the Health Research Board.
And, even though Ireland isn’t helping contribute to the funding, the researchers have said Irish children, with the condition, are eligible to take part in research trials.
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Friday 25 May 2012
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