Belfast Telegraph

Sunday 21 September 2014

Help us raise money so our son can fight killer disease

!!!! SUNDAY LIFE USE ONLY !!!!picture by john McVitty, Enniskillen, Co.Fermanagh, N.Ireland-07771987378Marc and Matthew Elliott.
!!!! SUNDAY LIFE USE ONLY !!!!picture by john McVitty, Enniskillen, Co.Fermanagh, N.Ireland-07771987378Damien and Adel with their children Marc and Matthew.
!!!! SUNDAY LIFE USE ONLY !!!!picture by john McVitty, Enniskillen, Co.Fermanagh, N.Ireland-07771987378Marc and Matthew Elliott.

A couple have made a heartfelt appeal for help to get their terminally ill son to America for treatment.

Adel and Damien Elliott from Enniskillen were left shattered by the news that both their sons Marc (4) and two-month-old Matthew have the incurable and deadly illness adrenoleukodystrophy, a rare genetic disorder which fatally damages the brain.

The Co Fermanagh couple are hoping to raise $850,000 to take their eldest son Marc to Minnesota for a bone-marrow transplant which could prolong his life.

Devastated Damien (25) said: “Help from anyone is important to us because if America is our only hope we’ll need to raise the money. We know there’s a recession and don’t expect hundreds of pounds from people, but if each person reading this would be kind enough to donate at least £1, it would mean everything.”

Cleaner Adel (26) and Damien, who works as a chef, revealed that over a period of four years, Marc was admitted to the Erne Hospital in Enniskillen nine times after experiencing several bouts of ill-health, including severe vomiting and unconsciousness.

Then, just last week, the family were hit with a further bombshell — that their two-month-old baby now faces the same uncertainty.

Although Marc shows no sign of illness, his disease is in the advanced stages and his inability to overcome infections such as the common cold, pneumonia and chest infections could be lethal.

The Elliotts are only the fourth family in the province to experience the disease.

In an interview with our sister paper the Sunday Life, Adel spoke of her heartache.

“We are just numb, and our numbness has turned to fear. I never expected anyone would tell me that my children could be taken away from me in such a cruel way.

“When we found out we all broke down, even the doctor got upset when she give us the news.

“I find myself trying to comfort people because it’s just so hard to deal with, and hearing it over and over again makes it worse.”

Damien added: “You think you’re coming to terms with it but then it hits you, again and again.

“We were told Matthew had a 50% chance of having the disease and 30% chance of carrying it, so we were expecting it — but it was still so shocking.

“We don’t know what stage the disease is at with Matthew, but hope that because it’s been found a lot sooner than Marc’s was, it can be monitored a lot more. We’re taking each day as it comes.

“The strength and love of our family and the local community of Enniskillen is the only thing that’s getting us through each day,” he said.

To help little Marc contact Karen Elliott on Belfast 028 663244 84 or Judina Tummon on 028 66325674.

Readers can also email reporter Rodney Edwards at who will pass messages and information to the family.

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