‘This is a desperate plea from a desperate mother. My boys are getting weaker every day’ – Irish Examiner

As children across the country count the sleeps until Santa Claus arrives, three Roscommon children with terminal conditions are hoping they will be able to move into their new home soon.

For the Naughtons, their Christmas dream is to be able to move into a house in Roscommon town which has been specially adapted to meet their needs and which will be furnished and laid out to make their lives easier.

A fundraising push is now underway to raise a total of 300,000 to fund specialist equipment including rotating beds, a hoist and a therapy area in a new home which has been developed through a trust set up to fund it. To date, approximately 260,000 has been raised.

The three brothers 15-year-old Archie and his 11-year-old twin brothers George and Isaac were all diagnosed with Duchenne Muscular Dystrophy in December 2012.

We still need you to donate and share our story if you have not done so already.A huge thank you to all of you that already have. Together, we will get Archie, George, and Isaac into their new purpose-built home for Christmas. Sincere thanks always. https://t.co/AbzquM5PLU pic.twitter.com/8oTc0oMiyV

One in every 3,500 baby boys across the world are born with the disease which is progressive neuromuscular condition which destroys muscle tissue. It cannot be treated or cured at present.

There are currently approximately 110 people living with the disease in Ireland.

Since the diagnosis, their parents Paula and Padraic have seen their boys conditions deteriorate as the disease takes control of them and all three are now wheelchair users, having become paralysed. Their arms are growing progressively weaker.

Paula said: This is a desperate plea from a desperate mother. My boys are all getting weaker every day.

The family currently lives in a two-storey home in Roscommon but a house more suitable for the boys needs has been built through the specially-established Join Our Boys Trust. Paula said the family did not want to financially benefit so the house is essentially being borrowed from the trust.

She explained: We are only borrowing the house for the childrens short lives.

Paula says that Archie, who will be 16 on Friday, is old enough to realise that he is likely to die in the new home they are moving into unless an effective treatment can be found through research.

Archie is older than the twins and understands what his condition means. And he does not want to be different from other boys.

The family cannot move into the house until it is fully equipped for the boys and Paula says the equipment which the boys need is very expensive.

She pointed out that the specialist beds have to be brought in from the UK. She said: The hoist is in position in the house but has not been paid for yet. She said the hoist alone costs 35,000.

Electric doors are also being installed to allow the boys open and close them themselves.

Paula said that the disease has progressed much faster in twins George and Isaac than in Archie. The diagnosis came after Isaac could not get up off the floor. All three were tested at the same time. Although Archie had been walking with a limp, it was not a concern initially as he had contracted meningitis when he was two years old and the limp was attributed to that.

Paula said: I would not wish this disease on anybody. It is terrible.

Duchenne usually affects boys in their early childhood, with affected people typically expected to live until their 20s or early 30s. The condition affects breathing as well as movement. The average age for diagnosis of the condition is five years old.

As well as becoming weaker, the disease has also affected the boys' immune systems. Archie is vaccinated against Covid-19 but George and Isaac are not yet in the cohort for vaccination.

The Naughton family want to raise awareness of the condition and are also pledging that any additional funds not required for the house will be used to fund research of Duchenne Muscular Dystrophy in the hope of finding a treatment or a cure for the disease.

Ultimately, they hope that any such treatment or cure would help save the lives of Archie, George, and Isaac.

Anyone interested in helping the Naughton family can log onto joinourboys.org for further information.

Original post:
'This is a desperate plea from a desperate mother. My boys are getting weaker every day' - Irish Examiner