| 19.9°C Dublin

Running for their lives

Watch Lucas and Noah Gorman at play -- rolling in the grass, wrestling and running about -- and you would never think anything was the matter. Although they are on the small side for boys of eight and six, they look like any other happy, healthy children.

"We take each day as it comes," says their mother Anne Eberling, who two years ago got the devastating news that both her sons had Duchenne muscular dystrophy. This severe form of the disease causes gradual paralysis and premature death. There is no cure.

Toes

"Lucas was slow to walk and when he tried, he walked in a funny way -- on his toes. We went to our GP and, after many tests, were told that Lucas had Duchenne and that 10 years from diagnosis was the maximum life expectancy."

"My husband John and I got no support, no hope, no anything. Then we realised Noah was showing the same symptoms. Can you imagine a neurologist consultant basically telling us to go home and enjoy life while things were still good? If we had done that, Lucas would be in a wheelchair by now."

Instead, the Celbridge-based couple looked abroad.

At a Newcastle hospital in the UK, they learned that early monitoring, medication, and daily physiotherapy and stretching can prolong the lives of Duchenne boys.

"In countries such as Belgium and Denmark, life expectancy for the boys would be three times higher than in Ireland. This is totally unacceptable."

Faced with every parent's nightmare, Anne realised she needed an outlet.

"I took up running a year ago to catch up with myself again. For the first few months, I would run up to the local petrol station and back. Then I heard about the Meet and Train group in Celbridge. Joining the group really helped me out of a dark place. I have made so many friends and it is such a relief to have a few hours to be with other people and talk about different things."

Funds

Now she is hoping to break 50 minutes on Monday, June 6. "I did the mini marathon before just to see what it was like, but this will be different. As well as running a good time, I hope to raise a lot of money for Duchenne research."

Joining Anne will be other members of the Celbridge group, including Andrea Fleischer -- who ran a highly respectable 44 minutes last year -- Andrea's 15-year-old daughter Vivian, and Finola Moore.

>To raise funds for Duchenne, see www.duchenne.ie. >Join the Celbridge Meet & Train group on Wednesdays at the Clane Road track (behind St Wolstan's). Contact is Michael on 087 265 5433. Newcomers of all standards welcome.


Privacy