Family determined despite Marc setback

Rodney Edwards • Published 19 Nov 2009 09:00 Comments 1 Comment

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Family’s agony over little boy’s grave

The five-year-old boy who underwent a vital bone-marrow transplant after being diagnosed with a rare terminal illness has been dealt with a further tragic blow - his body has rejected it.

Little Marc Elliott who is battling the deadly disease Adrenoleukodystrophy (ALD) has also been left with 'tunnel vision' after losing some of his eyesight following his long-awaited bone-marrow transplant.

Marc's loving parents Damien and Adel have been by their son's side for the 11 weeks he has spent in and out of Bristol's Royal Children's Hospital.

Speaking for the first time since the cruel twist from Bristol, Adel admitted the last few months have been a rollercoster of emotions for the couple.

"We have been given good news then bad news. It's like it's just flipped on us. If the doctors are baffled then you can imagine how we're feeling," admitted Adel.

"It all started on the Friday we came over. We met with the doctor who actually give us some extra, fantastic, superb, miraculous news. He said the enhancement on Marc's brain scan, which is the whole inflammation, had completely disappeared. The damage was still done but the enhancement that means the disease is actually active had completely vanished. The doctor said he's never seen anything like it in his entire career. He said his development was such a big deal that he was going to use Marc's scan pictures in conferences and was going to write a paper on it," she explained.

"So then we were wondering whether or not we should go through with the transplant or not. The doctor said he'd be 50/50 about it. He said; 'I think he might be alright without it because the enhancement is gone, but do you want to risk it?'. He said there was a 'chance' it could 'come back' and attack Marc anyway. We were sort of talked into doing it so we went ahead with it and were prepared for everything," said Adel.

Marc then started his chemotherapy on the Monday and went through a week's worth of it before being moved into isolation on day zero - the day he got his transplant. That took place on the following Tuesday and Damien and Adel we were told to expect their son to get "very" sore.

"We were also told that Marc would develop mucositis, which is lots of ulcers all over your mouth, all down your throat and in your gut. It's so extremely painful that you have to take morphine to ease the pain. But he didn't get any of it. To be honest he was only sick twice in the whole time we were there," she said.

After the transplant, Marc's white blood cells were frequently monitored to see how much of them were his and how much were the donor's.

"What you want to see there is that the majority of cells are from the donor. Marc's first test was brilliant, it was 92% donor but after that was done it started to drop dramatically. And was halved within a week," explained Adel.

The last test which was done just last week showed that it has now taken a significant nose-dive to just 6%, which means Marc is rejecting the bone marrow. "There is a small possibility that a small number of boys with ALD in single figures will be OK in that the transplant actually works. We're just looking at it that Marc has got what he needs and has got rid of what he doesn't," she said.

But now due to a nasty side-effect either caused by another type of disease which can affect the brain, treatment he was given or high blood pressure, little Marc has been left with just peripheral vision.

"It's quite scary - he can look straight ahead but he can't see to the side of him or up and down. If you're looking at a wall you can still see the ceiling and the floor, Marc can't. He can literally just see what's in front of him. He can't see things on the floor and would walk over them and on them. When he's walking through a door frame he would have to put his hands out either side because he can't see it," said Adel.

"We've got a lot of 'don't knows', 'what ifs' and 'wait and see'. Marc is still the same way he was six months ago when he was first diagnosed but without the inflammation. We're assuming the disease is not active and is dormant, if you like. But it's confusing us. If he has lost his peripheral vision then surely that means it is still active? We just don't know why this is happening,"

Once back home, Marc will go to Belfast for blood tests once a week. If nothing has happened in three months doctors will consider giving him a top up of bone marrow.

"I don't mind what hospital deals with Marc as long as they deal with him properly and we're not fobbed off. We had that at the start and I can't deal with that again," said Adel.

The inherited disorder that progressively damages the brain and eventually kills will not stop Marc's devoted parents from fighting for their son.

"We're not willing to accept it, we will not give up. The doctors have went from being positive to telling us he's just going to get worse. We've been through so much and I'm all up the left after what happened but we will keep strong for him,"

The Elliott family were due home in Enniskillen last night (Wednesday) and despite everything, they are eager to have a wonderful Christmas.

"We're going to have everyone around our house for Christmas. We're going to give our two boys the best Christmas they've ever had," said Adel.

This article appeared in Impartial Reporter 19 Nov 09

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Ita Madden
Unregistered User
Nov 25, 23:55
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Just reading about this brave young man, Marc and praying that please God will grant him a miracle in his life to start a beautiful new life with his parents and family. Lord Jesus let us all pray that Marc will have a wonderful Christmas and may all his little dreams come true in 2010. Ita

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