A Coalisland family, whose little boy suffers from a life limiting muscle wasting condition, will be among a delegation which will meet an expert in the field at an event in Stormont.
Four year-old Luke O’Hanlon was the inspiration behind a fundraising, awareness and campaign group set up by his mum Claire in 2012 and, since then, around £60,000 has been raised to fund research into Duchenne Muscular Dystrophy (DMD), which has already claimed the lives of Claire’s brother Marc, as well as three of her uncles.
On February 1, Claire will be among those to meet neuro muscular expert, Michela Guglieri, a senior research associate at The John Walton Muscular Dystrophy Research Centre in Newcastle.
Ms Guglieri will join a panel which includes representatives from Muscular Dystrophy UK, Dr John McConville, an expert in the care of adults with neuro muscular conditions, and families affected by DMD.
The aim of the meeting is to help improve knowledge in the case of Duchenne among families in Northern Ireland.
Claire is among those campaigning for better standards of care for those suffering from Duchenne in the north which, she says, fall well below those in other parts of the UK.
She issued an open invitation to anyone who would like to learn more about DMD, including family and friends affected by the condition and health professionals, to come along to the event in Stormont.
Claire warned poorer standards of care for those living with the condition in Northern Ireland can have stark consequences.
“Life expectancy for a child diagnosed with DMD here is 19 years old, compared to late twenties/early thirties in Newcastle and London where neuro muscular centres of excellence provide care and support from clinicians who are experts in DMD and other neuro muscular conditions, leading to more effective management of symptoms and ultimately a longer life”, Claire explains.
“While all the health professionals that work with Luke are excellent, the fact still remains that we have no dedicated neuromuscular health care team and knowledge of neuro muscular conditions among health professionals is extremely scant.
“One thing that frustrates me is the lack of support, advice and expert knowledge available to families in Northern Ireland to help them effectively manage the condition, especially when you consider that most had never even heard of DMD prior to diagnosis.
“Usually the only way that families in Northern Ireland can be seen by the centres of excellence in the UK, is if the children are taking part in a trial but so few here are eligible for trials at the moment so I wanted to look at other ways to access the advice of these centres and one way we considered was to look at options for bringing the experts to us.”
Among those Claire has been working with in her calls for better care standards is the “excellent” Pat Cullinan Charitable Trust, which has offered financial support for a pilot event.
This, coupled with financial and administrative support from MDUK means Claire and other families have been able to organise the Stormont meeting.
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