Mum of boys with rare disease wants better health services
Published 15/06/2015 | 02:30
The mother of three terminally ill boys who are battling Duchenne Muscular Dystrophy (DMD) has called for greater services for families affected by the disease in Ireland.
Paula Naughton raised the plight of her family after her three sons - Archie (9) and five-year-old twins George and Isaac - were diagnosed with the disease on the same day.
She and husband Padraig set up the Join Our Boys Trust to fundraise for research and a possible cure. The trust will hold an international conference in Dublin later this month. It is urging other families battling DMD to attend for free.
Around 120 Irish children have DMD. The conference will hear calls for greater services for rare illnesses here.
"There is no dedicated service for children with neuro-muscular disease in Ireland, that's unacceptablem," Paula said.
"Children are not getting the services they need and deserve. Here, they offer sympathy but the language used from the beginning is defeatist. This is not a condition, it's a disease - and we need to fight for a breakthrough. We need to re-frame the discussion," she added.
Her call was echoed by Dr Anne Jeffers, head of the research working group with the Join Our Boys Trust, who compared DMD to cystic fibrosis 15 years ago.
"We don't have the specialist care for children with rare diseases," she said.
"The proper dedicated services really do help ensure these children live long enough for a cure. I would compare it to where cystic fibrosis was when there was no dedicated service. Now we have fabulous statistics for people with CF, they can live normal lives with normal expectations," she added.
"There seems to be an acceptance that putting a child on steroids or giving them a wheelchair is the best we can do. We need to keep them moving, keep them as well as possible. There are massive changes in genetic research and there is a very real possibility there will be a cure in the future," she added.
The international conference takes place in Croke Park on June 24.
For information, go to: www.joinourboys.org