Editor's Note: In my job running a media company you often get requests to help a stricken family through publicity. It is a hard task, deciding whether to run such stories, because there are so many deserving causes. But the one that unfolds below is a no-brainer.
It involves three beautiful young Irish boys in County Roscommon, all suffering from a rare and fatal genetic disorder. I don’t know if anyone can help in any way but I feel an obligation to let their father Padraig Naughton tell their story.
He is contactable through [email protected]
I am sending you best wishes for the year ahead to you and your family from soggy Roscommon.
You do not know me, we have never met. I am writing to you as an Irish father married to a British woman with 3 sons, Archie (11) twins George & Isaac (6), who are beautiful in our eyes.
In November 2012, our lives [were] turned upside down when we were told on the same day that our three precious boys had a terminal muscle-wasting disease called Duchenne Muscular Dystrophy. A disease neither of us heard about even though we are both nurses.
Sadly the disease is like a “time bomb” going off every day inside their innocent bodies. But over time the accumulative effect of this disease leaves them paralyzed and eventually they die as every muscle in the body, including their heart and lungs, stop, resulting in their premature death in their late teens or early 20s.
My wife has and continues to be on a mission to find a treatment or cure for our boys and others affected worldwide. We set up a trust for the boys to raise awareness around the disease, to attempt to raise monies, also to build a purpose-built house to accommodate three motorized wheelchairs.
This situation is our worst nightmare that we live each and every day. We are desperate as any parent to give their sons or daughters the opportunities and solutions to help them to overcome the challenges that they face. Unfortunately, we have not started to build due to insufficient funds to complete it. Our local community here in Roscommon have been inspirational and supportive to us, but sadly time is running out for Archie is now struggling to walk and go up the stairs each night.
We are in the process of setting up a charity for the last two years, but this brings its own challenges working with volunteers who are so generous with their time and my wife and I working full time. Our charity number has just come through and it’s called “The JoinOurBoys Duchenne Research Foundation.” We are at the very early stages of this organization and no doubt this will be independent of our trust for the boys: joinourboys.org
I was wondering as an established Irish man in America whether or not you would be able to put us in touch with Irish American individuals who you think could raise our profile and get the desired solution for my three little innocent boys as quickly as possible. Alternatively, we are open to ideas, suggestions, and advice from people who may be in the know or by your good self.
I sincerely thank you for taking the time to read this letter and apologize for taking the liberty to ask for your help and support.
Thanking you in anticipation,
While the Join Our Boys website is under development, you can get involved now via the Facebook community.
You can donate to the boys cause via the Bank of Ireland in Roscommon Town (Sort Code: 905424 Account No: 26481623 IBAN: IE78 BOFI 9054 2426 4816 23). Alternatively you can donate via iDonate.ie or GoFundMe.com.