Parents plead for research donations

THE parents of an 18-month old boy — one of only 50 people in the world to be diagnosed with a rare and incurable disease — have pleaded for people to donate money to medical research which could save his life.

Little Joseph Swift suffers from Aicardi Goutieres Syndrome, an incurable, degenerative neurological disease.

It is an extremely rare form of Leukodystrophy, which means he has very little control over any of the muscles in his body and he can’t drink fluid because of the risk of choking.

Instead he has to be fed through a tube and needs round-the-clock care from his devoted parents.

His 34-year-old mother, Colette Dennigan, originally from Fermoy, Co Cork, said she and husband Matt kept hoping that one day soon researchers might make a breakthrough in either stem cell research or gene therapy.

Colette, a former international cyclist who represented Ireland in two world championships, said every day with Joseph is precious.

“The eldest person with this syndrome still surviving is 17. Every day counts as far as we are concerned. I’d hate for any parent to go through the year we have gone through,” Collette said.

The couple, who now live near Grenoble in France said that Joseph’s condition is so severe he needs daily sessions at care centres and hospitals.

Father Matt is undertaking the Ironman Triathlon in Switzerland on July 13 in the hope of raising money for research.

He will have to compete a 3.8km swim, a 180km cycle and a 42km run.

In the meantime several of Colette’s relatives throughout Ireland are doing their own bit on the fundraising front.

A mothers’ group in Fermoy will be holding a cake sale in the town’s Resource Centre next Saturday from 2pm to 5pm.

Colette said she was hoping other people might make a donation through a special website set up to highlight her son Joseph’s plight. lwww.tri4joe.com/donate