Family’s campaign to help ‘bright, happy’ little Luke
Beautiful little Luke O'Hanlon, with his parents Aidan and Claire, who have launched a fundraising campaign to help research into the genetic condition Duchenne Muscular Dystrophy. INTT2912-051X
LUKE Mark O’Hanlon is a bright, happy and adventurous 15 month-old little boy.
He has just found his feet and could spend all day walking his mum and dad round the garden of their home near Coalisland.
He loves being outside and loves the water in the swimming pool and at the beach.
To look at him you would never guess that this beautiful little boy has Duchenne Muscular Dystrophy (DMT).
Duchenne Muscular Dystrophy is a heart breaking, life limiting, progressive muscle wasting condition.
While the disease is rare it is the number one fatal genetic condition diagnosed in childhood.
While Luke is healthy now, he will probably never be able to run, jump or skip and, as he gets a little older, he will fall down more often, and will find it hard to get up from the floor.
He will likely need to use a wheelchair by his early teens and may develop scoliosis which will mean he will need an operation to help straighten his spine.
If he reaches his twenties he will need ventilation, first at night time, then 24 hours a day, seven days a week. His future after this is uncertain.
Luke’s mum, Claire O’Hanlon, has told the Tyrone Times the family are devastated by the news that Luke has the condition.
While Claire knew that she was a carrier of the disease they had hoped that Luke would be one of the lucky ones and would escape the grasp of the disease that has torn through three generations of their family.
When Claire’s grandmother, Ena Hampsey, gave birth to the first of her 10 children, she could never have imagined the fate that was to befall him, his two brothers, her two grandsons and her great grandson, Luke.
Unbeknown to Ena she was a carrier of DMT.
In two thirds of cases, boys with DMT are the sons of female carriers of the disease.
While carriers normally display no symptoms of the disease, the male children of carriers have a 50:50 chance of having the disease while female children have a 50:50 chance of being carriers.
The 50:50 rule stood true to Ena as five of her 10 children have been directly affected by the disease with three sons, Mickey, Paddy and PJ having Duchenne Muscular Dystrophy, while two daughters including Claire’s mother being carriers.
Ena’s boys with Duchenne were happy children but their lives were cut short between 16-19 years old, with two of the brothers having died only 10 days apart.
On February 29, 1996, Claire’s brother, Mark Darragh, died from respiratory failure as a direct result of DMT.
Claire explains: “Duchenne Muscular Dystrophy is a cruel disease; it has already robbed our whole family of four very much loved young boys who in every other respect were just like any other boy their age and had a lifetime of dreams they wanted to achieve. As it stands there is currently no cure for Duchenne and any drugs available simply mask the symptoms of the disease rather than treating the cause.
“But Aidan and I have something that was not available to my mum and grandmother when their boys were diagnosed – hope. Research has come on in leaps and bounds since Mark died, and for the first time ever there is a real possibility that there could be a treatment on the horizon for Duchenne within the next decade. The most promising treatment currently being trialled is a thing called exon skipping.
“In its most basic sense, all boys with Duchenne Muscular Dystrophy are missing one or more pieces of the Dystrophin Gene. This gene produces dystrophin which is essentially fuel for the muscles. Scientists are developing a drug which they hope will ‘patch’ over the missing piece(s) and will mean that the gene is able to produce dystrophin.
“Luke needs a drug that will ‘skip’ exon number 45 and the Dutch medical research company, Prosena, plan to start an initial trial with this drug in late 2012.
“The trials may take years due to lack of funding and for boys with Duchene time is of the essence. If these new drugs work they will slow down or stop the disease from progressing but will not reverse any damage already done so the longer the research takes, the more chance there is that little boys like Luke will continue to die too young and their families will continue to endure heartache for generations to come.”
Luke’s Dad, Aidan O’Hanlon, adds: “If these drugs work they will not cure Duchenne but will make the symptoms much milder and could see boys with Duchenne walk into their 30’s and could give them a close to normal life expectancy.”
The family have launched a fundraising drive to help the neuro muscular charity, the Muscular Dystrophy Campaign, raise the vital funds needed for research into DMT and other neuro muscular conditions.
Claire says, “We hope to do all we can to raise as much money as possible for the Muscular Dystrophy Campaign as they fight to bring an end to the tragedy of muscle disease.
“The Muscular Campaign are also working hard to improve the levels of care for sufferers of Duchenne in Northern Ireland where care levels are much lower than elsewhere in the UK. The Charity lobby parliament on care issues and are currently asking the question as to why patients in Newcastle upon Tyne can well expect to live into their 30s while patients elsewhere have a life expectancy of 18-25.
“The Muscular Dystrophy Campaign were a great source of support to our family when Mark was alive and when he had his spine operation, their Care Advisor was at the hospital most days checking in on him.
“The Muscular Dystrophy Campaign is committed to finding a treatment for Duchenne but they desperately need funds to make these treatments a reality within Luke’s lifetime.”
Some of Luke’s family members will be taking part in a sponsored zip line across the River Lagan in Belfast on August 25 to help raise much needed funds for the Muscular Dystrophy Campaign, so if you would like to sponsor them you can do so online at www.justgiving.com/leap-for-luke or if you would like to know about fundraising or how you can help you can email Claire at claireohanlon@live.co.uk or visit the Muscular Dystrophy Campaign Website www.muscular-dystrophy.org
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Monday 20 May 2013
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