Archie Naughton along with his two younger twin brothers Isaac and George where all diagnosed with Duchenne Muscular Dystrophy (DMD) a fatal muscle wasting disorder that eventually wastes away all the muscles in a child’s body until they eventually die from respiratory or cardiac failure. DMD is caused by the lack of a protein called dystrophin in a child’s body . Both Mum Paula and dad Padraic who are both qualified nurses had never heard of this disease before.
Archie (11) from Roscommon, Ireland lives with his two younger twin brothers George and Iscaac (6) and their parents Paula and Padraic.
Archie’s first mobility problems where put down to a dose of meningitis but mum Paula who had spent her life as a nurse knew there was something more to it and took to the internet franticly trying to find the cause of her sons problems until she came across Duchenne Muscular Dystrophy (DMD).
She needed to look no further nor hear any diagnoses from doctors as she knew this heart-breaking catastrophic muscle wasting disease was what not only Archie had but that her other two son’s had as well.
On the 9th November 2012 while Paula and Padraic drove to their local hospital awaiting the results of their children’s genetic test diagnoses Paula turned to Padraic in defeated desperation and asked him will she just drive their car into the harbour and save their children from this prolonged illness. The only problem was that they only had the twins in the car while Archie was at school and somehow even in her mind set she knew she couldn’t leave Archie behind.
Then the life shattering moment came when all of Paula’s theories where proven correct and not only Archie, but her 3 young boys where diagnosed with DMD.
They met with the national expert in January 2013 where he began to tell them there is no treatment, no cure and no government funding for research for DMD. The only thing they could possibly do for their 3 beloved son’s was to bring them home and show them as much love as possible before it was their time to die.
On an average day for Archie from the moment he opens his eyes in morning this disease affects his life tremendously. The only medication is 10 days on steroids then 10 days off steroids for the rest of his life.
Firstly He undoes the night splints that he has put on his legs the previous night to help stretch his Achilles tendons , He then has a number of stretching exercises he does before breakfast, He then goes on to travel to and from school where he finds it very hard to get in and out of the car.
He also requires a special chair and table at school for him to be able to be most comfortable for his school day and afterschool homework club.
Every little movement or step for Archie is a constant strain and takes so much energy and effort that someone not suffering from DMD would take for granted on a daily basis.
“The constant muscle aches and cramps limit him from doing sport when all he really wants to do is play football and rugby like any other 11 year old boy. He is a very sweet, caring loveable little boy but the constant steroids effect his mental health just as much as they impact his physical health ” Says his mum Paula.
Last Sunday Archie and his family where all set to go visit Santa until his mam found him with tears pouring down his cheeks, holding a leaflet containing details of the DMD illness and its faith.
Archie’s first realisation that DMD was going to take his life soon, he ripped up his Santa letter and began to write a new one. “Santa I had asked for football boots on my last letter but what my Christmas wish is really for, is for you to bring me some medicine to make my muscles better so I won’t die”
Paula then went on to tell me that
“Archie is an example of what will happen to George and Isaac and every other child who has DMD. People sometimes tell me that it’s awful that all 3 of my boys have this disease but for me it would be the exact same heartache and fear as if one of my children had it. I know what’s to come and I know the faith of my 3 beautiful boys that’s why I am asking everyone to spread awareness and donate. Not only for my boys because they hold huge potential to save the lives of this generations children”
But Paula and her husband Padraic refuse to do nothing for their children and sit back and let this catastrophic disease take the lives of their boys, setting up Join Our Boys Duchenne Research Foundation.
They with the help of the directors Stephen O Brien, David Gleeson and Dr Anne Jeffers have set up the charity to fund the research and rehabilitation for all children suffering with DMD. Although Leo Varadkar had put DMD in the 2016 HSE service plan the government do not fund any research for DMD.
Every weekend these incredible parents and their children volunteer their time and effort to take the streets of Ireland to raise as much awareness and funds as possible for Join Our Boys Duchenne Research Foundation. They cannot do it alone and need as much help as possible.
Join Our Boys Duchenne Research Foundation is currently looking for a well-known ambassador if you or anyone you may know would be interested.
As nobody gets paid and the work is 100% voluntary they are also looking for volunteers to help out.
So What can you do to help out?
TEXT MUSCLE to 50300 to donate €4.00
To volunteer contact us on [email protected] or call 0838838813
Or visit our website