'Archie did not want to leave us and he fought to stay here'
Sixteen-year-old Archie Naughton has died, a heartbreaking post on the Join Our Boys Trust Facebook page has confirmed this evening.
The teenager had been a critical condition in the Mater Hospital in recent days, with his family asking people to pray for him and light candles.
#PrayForArchie’ and ‘NeverEVERGiveUp’ had gone viral over the last week as thousands of supporters of Join Our Boys Trust offered their love and support to the family at this extremely difficult time.
In 2012, when Archie was six and the twins George and Isaac were two and a half, all three boys were diagnosed with Duchenne Muscular Dystrophy (DMD).
DMD is a catastrophic muscle wasting disease which will eventually impact on the boys’ ability to walk, use their limbs, or even hug the people they love.
Those who live until their late teens are likely to become totally paralysed and will eventually die of respiratory and or heart failure.
In a poignant message on social medai just minutes ago, the Join Our Boys Trust confirmed Archie's death today.
It reads: "As parents our only concern ever, is to protect our child (ren).
"However sometimes things happen that you have absolutely no control over.
"Duchenne is one such thing.
"Our beautiful heroic son Archie John has died and our hearts are smashed into millions of pieces. We shall never recover.
"We already miss his presence; his warmth; his love; his humour; his tenacity and his infectious beautiful smile. The void he has left is vast and dark and catastrophic.
"Archie did not want to leave us and he fought and fought to stay here. He had so many dreams and plans for the future. Duchenne has robbed him of so, so much.
"Forever in our hearts and minds and forever 16 years old.
"Thank you most sincerely Archie, for showing us how to live life to the full and for never ever giving up.
"We will love you FOREVER Archie; we are so, so proud of you.
"Please continue to #PrayForArchie & also his two beautiful & devastated brothers George & Isaac.
"Mummy, Daddy, George & Issac"
The “Join Our Boys Trust” was set up in 2014 following a conversation with a consultant in Temple Street Children’s Hospital, Ireland who advised the family to ‘go home and love their children’.
The aim of the Join Our Boys Trust is twofold -to complete a purpose-built house that will accommodate Archie, George, and Isaac for as long as they require it, and to fund research into finding a cure for DMD disease.
Since the trust was established, enough money has been raised to build a purpose-built house for the family, which is in Roscommon town.
Funds continue to be raised to ensure the ongoing running costs of the property are covered as well as provide specialist care to George, and Isaac, who are both confined to a wheelchair. It will also support ongoing research to find a cure of DMD disease, the ultimate goal of Join our Boys Trust.