Published: Thursday, 25th June, 2009 9:00am

"Unbearable" news for any family to receive

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It was the news they hoped they would never receive, but the parents of terminally ill child Marc Elliott have now been told their baby son, Matthew could also have the same rare and incurable disease as his brother.

Blood test results revealed last week that seven-week-old Matthew Elliott has a chain of fatty acids occupying his blood, which could result in him developing adrenoleukodystrophy (ALD), the same genetic disease currently threatening the life of his big brother Marc.

Parents Adel and Damien Elliott as well as their extended family have suffered immense anguish since learning of Marc"s condition and have said the thought of losing both their children now is 'unbearable'.

Despite the devastating news, the Elliotts were given a glimmer of hope this week when doctors at Bristol Children"s Royal Hospital confirmed they would offer Marc a bone-marrow transplant following the return of positive results from Marc"s psychological tests.

A bone-marrow transplant is the only form of specialist treatment that can help prolong Marc"s life and because his condition is in the advanced stages, doctors have warned the transplant could either prolong Marc"s illness, speed up his condition, leave him blind or paralysed or worse, leave him with only six months left to live.

Due to Marc"s strong blood, doctors have already found five bone-marrow donors and have agreed to work with specialist doctors in America who can advise on performing bone-marrow transplants on children with advanced stages of ALD.

Armed with faith and united in support, Marc"s brave parents have decided to put him through the operation despite the risks, as they believe it is their only hope of keeping their son alive.

'We have got to take this chance,' said his mother Adel.

'They keep telling us that there are risks involved in putting a child with advanced ALD through a bone-marrow transplant but we know Marc can come through it, he has been through everything else since he was a baby and we have total faith in our son,' she said.

Last week, Adel and Damien were given the results of their son Matthew"s blood tests in Belfast just days after his christening and were left feeling "numb" and "helpless" and when they found out the harrowing news.

'When we were told by Dr. Hughes at the Royal we could feel panic within ourselves and I just burst into tears. To find out you could lose both your young sons in a matter of years with no cure for their disease is just heartbreaking. We just hope and pray that as Matthew grows older it won"t develop and we will continue giving him Lorenzo"s Oil which helps reduce the build of fatty acids in the blood,' she said.

Initially, when the Elliotts were told by Bristol that they may not be able to offer the transplant, they considered taking Marc to a university hospital in Minnesota, USA, which performs bone-marrow transplants in children with advanced ALD and said they could operate on Marc without delay.

However, a major delay was that the transplant came with a $850,000 price tag and because Marc needs his transplant urgently Adel and Damien admitted they don"t think they would have enough time to raise the money and are putting their total faith in Bristol, which offers the transplant on the NHS.

'Because Bristol never confirmed to us that they were going to offer Marc the transplant, we thought our only hope was America as they were willing to see Marc right away but after careful consideration we now believe Bristol is a more realistic choice as he needs this transplant urgently and we honestly don"t know if we could have raised all that money in just a matter of months.'

A major fundraising campaign is under way to raise money for the Elliotts so they can be by Marc"s side during the gruelling four-month transplant procedure as well as offer him the best post-operative care when he returns home.

Adel, who is a cleaner and Damien, who is a chef, will have to give up their work and live in Bristol monitoring Marc"s recovery process everyday for months.

When they return home, Marc will have to receive 24-hour-care and to avoid Marc risking infection, they will have to sterilise their house and buy new beds, new clothes and wash him four times a day as well as buy special food for his dietary requirements.

They will also have to consider home-schooling for Marc as he could be out of early education for almost a year.

The support for the Elliott"s over the past few weeks has been phenomenal with people making donations from as far away as Australia and America.

Adel said she can"t thank everyone enough and said the huge support keeps their family strong and even more determined.

'The support we have received has been unbelievable. The phone has not stopped ringing. Even people from a far away as Australia, complete strangers have read our story and offered donations. This support gives us great strength and just shows the kindness of people and we also can"t thank the local Fermanagh and Enniskillen community enough for their sincere help and generosity.'

In the meantime, the Elliotts will continue to give Matthew and Marc Lorenzo"s Oil, which was specially developed by parents of an ALD child, and can help reduce the build-up of long chain fatty acids in the blood which damage the brain and eventually kill.

The Royal Victoria Hospital received the first batch of Lorenzo"s oil from Germany and will be available for Marc and Matthew throughout their lifetime.

'Marc will need a high dosage of Lorenzo"s Oil which is 45mls a day and a bottle only lasts him nine days so he needs almost two bottles every week,' Adel said.

Nurses in the Royal Victoria Hospital in Belfast are also astounded by how well Marc can drink the oil.

'She said in their experience, it has been so difficult to give children the oil as they just refused to drink it because of the taste and texture but wee Marc sits up takes it right away with no bother out of him, that"s how strong and special he is,' said Adel.

Marc will be taken to Bristol in a matter of weeks to have a central line inserted into his body to begin the transplant process.

Despite all the love and support received, Adel and Damien said they can"t help feeling anxious as they await the call from doctors to tell them they are ready for Marc.

'I"m not worried for the future because I know Marc can come through this but I am worried watching Marc go through the transplant process. It"s going to be hard for him and painful for us as parents, we just pray and hope that he will come through this, in fact, we know he can,' said Adel.

Meanwhile, The Marc Elliott Fund is going strong with £2000 raised alone at a pack backing day in ASDA last Saturday. An evening of music with Vincie Walmsely will also be held in Charlie"s Bar on Friday (tomorrow) June 26 with doors opening at 9.00pm and admission is £5.00.

On Monday next, June 29, a special fundraising concert is to take place at the Fort Lodge Hotel, Enniskillen with live music on the night from Cathal Brough, Frank Brough, Francie Smith, Anthony McBrien, The Benn Sisters, Freddie Beacom, Laurence Connor and Vincie Walmsely. Doors open at 8.00pm and concert starts at 9.00pm, Admission is £10.

To coincide with Marc"s fifth birthday on July 8, children and parents can look forward to a birthday fundraising funday, taking place on Saturday July 4 at Donnelly"s Playing Field, Kilmacormick. A five-a-side soccer tournament will be held and their will be bouncy castles, face-painting and disco for children.

A Marc Elliott Fund Facebook webpage has also been set up. To access the page, Facebook members can join by typing in "Mark Elliott Fund" on the Facebook search bar and find out how you can donate and support the campaign.