'Will our 10-year-old son be around next year? We don't know' - Desperate parents of three terminally ill children in race against time for cure
Two years ago, Independent.ie met Padraic and Paula Naughton, whose world was shattered when they found out all their children were diagnosed with a rare terminal illness. We returned to see how they are dealing with this heart-breaking condition two years on.
“Personally I feel as if I have a veil over me and the world is not as bright as it was,” says mother-of-three Paula Naughton.
“Life will never be the same again. I really wish I could say it was. Birthdays are ruined. The gloss is taken off of everything.”
In September 2012, Paula and her husband Padraig were given the devastating news that their three children Archie (10) and his twin brothers George and Isaac (5) had all been diagnosed with Duchenne's Muscular Dystrophy (DMD). The neuromuscular disease is fatal in all cases, and there is no treatment or cure.
Since then, the desperate Roscommon-based parents have set up the 'Join Our Boys' trust, which aims to ensure their sons not only have the best possible life they can. The trust also lobbies and campaign for a treatment and cure for the dreadful condition.
“As things stand, all of these children and young adults with Duchenne's are going to die in the same way. They’re going to die prematurely. They’re going to die fighting for their breath. We’re still not in a position to treat them in 2016,” Paula said.
Despite facing uphill battles no child should have to face, all three children are extraordinary, according to their loving parents.
“We’re so grateful to have our children. There are people who would give their right arm to have one of our sons. We know that,” Paula said.
“They bring us so much joy. They’re the centre of our world. They have been since before they were born.
"The glass isn’t just half full with Archie, the glass is brimming over and the world is full of possibilities and miracles and hope. He can’t run as fast as he’d like, but he still believes he’s going to play rugby for Ireland and he still believes he’s going to be a goalkeeper for the soccer team."
This is very clear when chatting to the 10-year-old sports fan, who says he’s feeling “great”. Last month he received his first wheelchair to help him when his legs can no longer support his weight.
Everything is a joke to them [the twins]. Physical therapy and occupational therapy. It's all a game. That's great,"
"I think because Archie does physical and occupational therapy too, they see it as part and parcel of life," Padraic added.
"Because their eldest brother, 'Ra-Ra' as they call him, does all this stuff, it's normal for them as well so they don't see anything unusual about it."
In their campaigning for a DMD visibility and funding from the public, Paula and Padraic are hoping to find a well-known ambassador who will help them lobby for a cure.
At night time, when the kids are tucked up in bed, this is when the real campaign works kicks in for the couple, both of whom work in the medical field. They have spent a huge amount of time trying to contact people in the public eye for help, even if it’s just to meet the children.
“There’s no shame in saying that it’s exhausting. It’s exhausting sending emails to strangers; Pouring your heart out to people in the public eye in the hope that just one of them will bite,” Paula said.
Padraig is hopeful that one of Archie’s heroes might be able to help at some point.
“He’s obsessed with Conor McGregor and wanted to tape his fight off the television. He was upset when he got hurt.
“He’s intrigued by [McGregor’s] tattoos. He has this tendency now when he meets people, one of the first questions he asks is ‘do you have a tattoo?’ and ‘where is it?’
“That’s because of how much he loves Conor.”
WEAR ORANGE DAY
On May 1st this year, the third Wear Orange Day in aid of Join Our Boys is set to take place across the country. The parents are hoping supporters will don an orange item of clothing, since it’s the boys’ favourite colour.
Padraig and Paula are also hoping people will donate €2 if they can. Some schools in the area will also be hosting a non-uniform day in support of the trust.
In 2014, Locals lined the streets adorned in orange in support of the three young lads.
It wasn't just the people that were wrapped up in orange. Shop fronts and lamp posts were changed to orange for the day. The boys’ mother said it was more than she could have asked for.
"We're surrounded by extraordinary people. The community...I don't know what the word is. Whether it's phenomenal or fantastic. They've just been absolutely amazing," Paula said.
Despite the support not only from their friends and neighbours in Roscommon, but all across Ireland, Paula and Padraig are consigned to the cruel realisation that there is so much yet to be learned about DMD.
There’s a question mark hanging over the life expectancy of all their children and that’s the terrifying thing, according to Padraic.
“Will Archie be around next year? We don’t know. It’s a horrible thing to say, but there’s so much unknown with this illness. That’s why we’re so desperate. That’s why we’re fighting to make sure that he is going to be around and that the twins are going to be around. That they’re going to live fulfilled lives.
“The miracle is the boys are here every day. That’s what we’re desperately trying to hang on to. We never know though.