Archie Naughton's mother has described his death as a "pain you can't put into words."
The 16-year-old passed away at the Mater Hospital in Dublin on Thursday morning after living for ten years with Duchenne Muscular Dystrophy.
Hundreds of messages have been shared online since his death, remembering him and his family through their work with the charity Join our Boys which they founded to find a cure for the terminal disease.
A significant crowd is expected to pay their respects to the much-loved teenager at his funeral mass on Monday in Roscommon town.
His mother Paula today wanted Shannonside FM to extend thanks to everyone who has offered support and prayers in the last number of days for the family and Archie.
She says his death leaves a void in so many people's lives :
"We actually feel like we are in a really bad dream and we can’t wake up, but we also know that Archie has died and he isn’t with us physically anymore.
And it's just a pain that you can’t put into words. It's the void he has left for his family and his friends and our community is vast, and it's very dark, and it feels utterly catastrophic."
You can hear Paula's full interview here:
The interview is also transcribed below.
It begins as Anne Norris first asked Paula how Archie made her and the family feel :
Look, like every parent you know, every parent is proud of their child or children and there is no doubt that Archie was, and remains to us, an exceptional, exceptional human.
He was 16 years old, and he really really didn't want to die. And he fought to the very end and this is anything any parent ever imagined they would have to witness and we couldn't be prouder of him.
And I think the thing that's so extraordinary. We're in the house now with our neighbours and two priests and we were just saying that although he was only 16, he probably packed more into life or we know he did than some people who live many, many more years.
He, despite the fact that he had this catastrophic disease called Duchenne, he never let that stop him, aiming for his goals and his dreams.
And we actually feel like we're in a really bad dream and we can't wake up. But, we also know that Archie has died and he isn't with us physically anymore. And it's just a pain that you can't put into words.
It's the void he has left for our family and his friends and our community really the void is vast, and it's very dark and it feels utterly catastrophic.
Anne also asked Paula how she felt getting messages of support and prayers from across Ireland and the world in the last number of days:
I think, look, the people are extraordinary. That's another conversation we were just having a little while ago here.
We could never have predicted the amount of support that Archie, George and Isaac have received. Also the amount of work that we've been able to achieve because of people's support.
You know, we've battled hard to try and get, you know, research completed to try and find a treatment and ideally a cure for Duchenne. We're linked in internationally with Duchenne organizations, because of people's generosity we've had the conferences in Dublin you know, we now have we have a research center in Dublin for Duchenne.
They can't help Archie, George and Isaac because, you know, the drugs aren't there for them, but younger boys are on trials for drugs that never would have happened. And you know, that is Archie's legacy.
The challenge we have, of course, is that we are going to bury one of our children on Monday, but we have two other boys with this disease. So, you know, we can't give up, we cannot give up, and what is so powerful about Archie and tells you so much about his spirit and his personality and his huge heart. Whilst his heart failed him, he never failed us, because even when he was dying, his only wish he kept saying "Mama, please don't let this happen to the boys, I don't want them to suffer like me. I don't want other boys to suffer like me. So please, can you get some medicine for them?"
So even in his death, he was thinking of others. That's what Archie always did. He was a very selfless and beautiful, beautiful person and we are so privileged to have been his parents. And I would say this and it might sound egotistical but our community is much better we are better people because we had the privilege of knowing Archie and him being part of our lives.
Anne concluded by offering Paula a chance to thank everyone who has been so supportive over the years in their efforts to highlight DMD:
Look, the first people that ever interviewed us when we launched the trust in 2014 was Shannonside, it was Joe Finnegan. We've had enormous support from Shannonside, from Joe, from yourself Anne, and from Mary Claire Grealey.
You've always, always supported the boys. Joe had the boys in one time and they were interviewed and so did MaryClaire and also obviously your listeners have been a massive, massive support to the boys to the trust and to Paraic and I as their parents..
We were humbled and forever grateful and we wish we can say this was the end for us, that we don't have to keep doing what we've been doing but as I said, you know, we've got our two sons and we know there's all these other children that need, they need a treatment. So unfortunately we were going to have to somehow find the strength to keep going."
