As he turns five, Marc prepares for transplant

Catriona Loughran • Published 9 Jul 2009 14:25 Comments 1 Comment

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Marc Elliott, the Enniskillen five-year-old diagnosed with incurable genetic illness adrenoleukodystrophy (ALD), has this week had a central line inserted into his body in preparation for his bone marrow transplant in two weeks" time.

The brave boy, who celebrated his fifth birthday only yesterday (Wednesday), was diagnosed two months ago with the rare disorder that affects 1 in 40,000 people and causes damage to the brain and eventually kills.

Because ALD is inherited, doctors have also discovered that his eight-week old baby brother Matthew is showing symptoms of the disease.

An unbearable situation for parents Adel and Damien Elliott who face losing both their young sons to the illness.

A bone-marrow transplant is the only form of treatment that can prolong Marc"s life.

Although due to Marc"s late diagnosis of the disease, doctors have warned there"s a chance the transplant could worsen his condition and potentially leave him blind or paralysed.

Despite the implications at stake, his brave parents are going ahead with the transplant as they have total faith in their eldest son.

Anxiously, Adel and Damien waited outside the theatre of Belfast"s Royal Victoria Hospital on Tuesday where Marc received the line to make it easier for drugs to be administered into his bloodstream without the need of constant injections.

'It"s terrifying. We sat in the Royal yesterday like nervous wrecks and wee Marc sat happily playing his Nintendo DS so unfazed by the serious operation ahead of him. He knows there is something wrong with him and we have sat him down and talked to him about what he has to go through, but as always, he accepts that hospital treatment is part of his life and deals with it the best way he can. When we see how strong he is and how well he responds to tests, this only makes us stronger and more determined to go through with the transplant,' said Adel.

Marc along with his parents and baby Matthew will travel to Bristol Royal Children"s Hospital on July 23 to receive his pre-transplant health evaluation.

He will then be allowed home for the weekend before being flown back to Bristol where his risky bone-marrow transplant procedure will begin.

Adel, Damien and baby Matthew will have to stay in Bristol for up to six months before they can be told Marc is well enough to return home.

They admit they feel more on edge as the days go by.

'It"s hard to relax when you know what is ahead of your wee boy. All of Marc"s life we have been used to him being in and out of hospital but nothing in the whole world can prepare you for this. You begin to think about the future and the worse that could happen but it"s very easy to slip into the negative thoughts, so we are just keeping positive for our son who we know can come through this and we are praying for him constantly,' they said.

The Elliotts along with their extended family have set up the Marc and Matthew Elliott Trust, a local charity which aims to raise awareness about the effects of adrenoleukodystrophy (ALD) and to help raise funds for the family and for them to be able to look for other forms of treatment.

Over £1,000 was raised on Saturday at the family fun day at Donnelly"s Playing Field on the Cornagrade Road and a charity bingo night is to be held at Rainbow Amusements tomorrow evening (Friday), July 10 at 8.00pm. A 60s themed fancy dress party will also take place tomorrow night at the Cornerstone Bar. Everyone is welcome.

Meanwhile, a charity Gaelic football match between current and former players of Coa O"Dwyers will take place at the GAA grounds on Sunday at 7.00pm.

A raffle, which was due to be held on Saturday and could not proceed because of the wet weather, will now take place after the match at Coa Community Hall where a barbeque and dance will also be held.

This article appeared in Impartial Reporter 09 Jul 09

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Michelle Horak
Unregistered User
Jul 10, 00:16
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Stay Strong, Be Positive you are in my thoughts each and every day. I am with The Myelin Project of Canada, and have been reading your story, posting it on my Facebook Page, Twittering your story, talking to friends, family. It is tough, I have BEEN, THERE, done that and just know that I am here, and you are not alone.

Sending you a load of Zen your way~~~~MamaShell aka Michelle Horak, Ontario Canada

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