The parents of three boys diagnosed with a terminal illness said “hope” a treatment can be found for their sons enables them to cope on a day to day basis.
Paula and Padraic Naughton were told almost four years ago that their son Archie, 10 and twin boys George and Isaac, 5 had Duchenne Muscular Dystrophy (DMD).
There is no treatment or cure for the neuromuscular disease which is fatal in all cases.
Paula said: “The very human part of us hopes against hope that there will be a treatment not only for Archie, George and Isaac but for all of the other children.
“We understand as parents the hardship, the heartache and devastation that a disease like this causes the whole family. But at the same time we know there are people who are worse off than us. We don’t have the monopoly on grief.
“But we would really like to be without this shadow, we really would. We would like that for every other family. If we could get some treatment for Duchenne, there is huge belief and passion within the scientific community that other forms of neuromuscular diseases will be treated as well if they can conquer this one.”
Padraic said they feel “helpless” watching their sons’ conditions deteriorate.
“Part of my coping strategy is in some part denial in that I want to believe that there is a solution and we’ll can get a result for him and that enables me to have hope.
“Instinctively I believe that something is going to happen. I do not know how soon how quickly and that’s what helps us to keep fighting. But it’s difficult. It’s not easy,” he said.
Each year 20,000 children worldwide are born with DMD, 99 per cent of these are boys.
Paula and Padraic from County Roscommon started the Join Our Boys Campaign – www.joinourboys.org to help raise awareness of the condition and raised vital funds to help research for a treatment for the terminal condition.
The #WearOrangeDay which coincides with the twins’ sixth birthday takes place this Sunday, 1 May in aid of the campaign. But people are being urged to raise funds throughout May for Join Our Boys by organising an event.
Archie who recently returned from a trip to Lourdes told Ann Marie Kelly on Midlands Radio 3’s The Open Door programme that his dream is to play rugby for Connacht and possibly even Ireland.
He loves all sport and his favourite footballer is Messi.
Padraic said: “Archie knows he has got a muscle problem. He gets his muscles don’t work like other kids the same age. We now feel that more recently that his awareness of his inability to do thing has become much more pronounced. But he never talks about it. “
He added: “What is so unique about Archie is he is very aspirational which is a fantastic quality to have. Some might say it is naïve but nothing fazes him. In his eyes everything is possible. I suppose that is the strength of his resilience within him as well. I think that helps us too in relation to helping us to get out of bed every morning.”
The twins are less aware of their condition.
Paula said: “They would know that their muscles don’t work properly. They would be slower than their peers.”
She added: “I suppose the tragic thing is we are now at a stage for Archie today is his best day and that’s going to be the same every day because he is getting weaker.
“So we now have a situation where his brothers who are five can run faster than he can. That for us as parents is heartbreaking and for Archie that is bewildering.”
She said they are privileged to have their children. “I think anyone that is able to have children is very privileged. There are so many people that don’t and can’t have children which must be so, so difficult,” she said.
Paula said being told that your three children are going to die prematurely and that they have a disease that can not be treated is not something you ever anticipate.
She said: “With this disease any of the children could go into heart failure tomorrow and we have to seriously ask ourselves are we making the best use of what limited time we have with them. As things stand all three of them are going to die prematurely we just don’t know when.
Paula added: “The difference for parents like us is the knowing, knowing that this is going to happen unless basically a miracle happens.”
Leave a Reply