Marc travels to Bristol for transplant at weekend

Editorial Department Catriona Loughran - 1503 • Published 3 Sep 2009 09:00 0 Comments

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Little Marc Elliott, the Enniskillen five-year-old diagnosed with a rare and genetic illness, is to finally undergo his long-awaited bone marrow transplant on Saturday.

It's been a difficult time for parents Adel and Damien Elliott since they were told by doctors five months ago that their little boy is terminally ill with a rare disease called adrenoleukodystophy (ALD).

Adrenoleukodystrophy (ALD) is an inherited disorder that progressively damages the myelin sheath surrounding the nerve cells in the brain. People with ALD accumulate high levels of saturated, very long chain fatty acids in the brain due to a faulty gene and do not produce the enzyme that breaks down these fatty acids in the normal manner.

This cruel disease has no known cure and eventually kills.

A bone-marrow transplant can prolong the life of an ALD sufferer but doctors told his parents that because Marc has been diagnosed in the late stages of the illness, a transplant could effectively worsen his condition by either speeding up his illness or leaving him blind or paralysed.

But Marc's continuous strength and remarkable physical well-being has stunned doctors, who have allowed the risky transplant to go ahead, much to the relief of his parents, who know its their only hope of keeping their son alive for as long as possible.

Marc was due to start Holy Triniity Primary School on Tuesday and when he returns home may have to be home-schooled.

Today Adel and Damien will travel with their son and baby brother Matthew to Bristol's Royal Children's Hospital where Marc will undergo final tests before his conditioning treatment begins in preparation for chemotherapy.

After his transplant, Marc will spend up to six weeks in isolation with Adel and Damien the only people allowed to visit him during his stay.

They will have to wear special surgical scrubs into his room everyday to avoid risk of infection and the playful five-year-old is only allowed to bring in a few select toys and has chosen his Nintendo DS and his Ben-10 figures to keep him company.

He will remain in Bristol for up to four to six weeks subject to how well his body responds to chemotherapy and the bone marrow treatment.

Adel and Damien know the risks involved are high but are keeping strong for their son.

"It's extremely terrifying. We see him look so well now but after this transplant we don't honestly know what to expect. We hope that it's going to be a case of making Marc sick to make him better. We know the chemo will be the hardest for him it's going to make him very, very sick but we just hope the transplant will make him better and that he will be OK and that this transplant will not speed up any inflammation in the brain," she said.

Adel and Damien have carefully explained to Marc what will happen to him once he arrives in hospital, but as always, Adel said he takes it in his stride.

"He'll just shrug and say 'whatever' and doesn't let it worry him. We are happy he is like that because we know he is not scared of what's going to happen to him but all the same it doesn't stop us from worrying as we understand how important the success of this transplant will be to us and our family."

For the duration of their stay, Adel and Damien along with baby Matthew will stay in a hospital house located close to the hospital where they can relax and get some sleep. They will be accompanied by Marc's grandparents Judina (Adel's mother) and Karen Elliott (Damien's mother) who will take turns each week to fly over and look after baby Matthew.

If all goes well and no complications arises, the Elliotts hope to have Marc back in Enniskillen before Christmas.

"Altogether we will have to stay for approximately 12 weeks that's if everything goes OK and Marc is well enough to go home. If it was a bone marrow transplant performed on a child without ALD there is 100 per cent chance the child will be out in a matter of weeks. But unfortunately we are not in that position so we just have to hope and pray the outcome is a positive one and that he is home in time for Santa."

The Bank of Ireland has recently confirmed that the cash raised for the Marc and Matthew Elliott Trust fund stands at £44,000 and it keeps growing.

"It's unbelievable and we are so grateful for what everyone has done. What we are planning to do, hoping all is well with Marc, to donate some money towards the Kennedy-Kreiger Institute in America that researches disorders of the brain, spinal cord and musculoskeletal system. It is the only place in the world that is actively looking for cures and treatments for ALD and we hope to gave some money to them to see what other forms of treatment are available for Marc," she said.

As the fundraising campaign continues, the Elliotts are facing the possibility that after Saturday, life may never be the same again.

"We have faith in our son, he is what makes us strong and we know he can do it as he's a wee fighter, he's always been a wee fighter," they said.

This article appeared in Impartial Reporter 03 Sep 09

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