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Anguish of couple who must watch their boys die
Sunday, 21 June 2009
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A young family has been rocked by a double heartache — both their kids have the same killer disease.
Two brave little brothers, Marc and Matthew Elliott from Enniskillen, Co Fermanagh, suffer from a genetic condition which has rendered them terminally ill.
Their heartbroken parents, Adel (26) and Damien, have been trying to cope with four-|year-old Marc having adrenoleukodystrophy, an incurable illness which damages the brain and eventually kills.
However, their world has now been shattered after they were told that their eight-month-old son Matthew also has the disease.
Last night their distraught mum Adel told the Sunday Life: “We are just numb, and our numbness has turned to fear.
“We’re petrified about the future and don’t know what to do.
“I never expected anyone would tell me that my children could be taken away from me in such a cruel way.
“We’re so heartbroken. When we found out we all broke down, even the doctor got upset when she give us the news,” added Adel.
“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.”
Her husband Damien (25) added: “You think you’re coming to terms with it but then it hits you, again and again.”
In a story that will frighten every parent in Northern Ireland, the Elliotts revealed that last Wednesday, just three days after his christening, eight-week-old Matthew was found to be suffering the same genetic disorder as big brother Marc.
Now they are terrified of losing both their children — BUT say they will fight to save their kids’ lives and the lives of others.
Shocked to the core, the family’s world was first turned upside down when they learnt that Marc had developed the terminal illness after taking him to see specialists at Bristol Hospital.
“When we found out we just looked at each other, we were so shocked and didn’t know what to think,” said Adel.
“Adrenoleukodystrophy takes over the brain and shuts everything down.
“Our baby would lose his sight, his speech, his mobility — everything — and could be taken away from us in six months.”
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.
Adel said: “Marc has never been a ‘normal’ child because he’s been in and out of hospital with the littlest of infections.
“He’d get something like a sore throat, which over time would develop into something much worse and then he’d stop eating, then drinking.
“Then he’d become very sick and would start vomiting, before getting very drowsy.
“Next he’d become severally dehydrated and would have to go on a drip at the hospital. Eventually doctors twigged that something wasn’t right.”
Cleaner Adel 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 Elliotts were hit with a further bombshell — that their two-month-old baby now faces the same uncertainty.
Damien said: “We were told Matthew had a 50 per cent chance of having the disease and 30 per cent 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.
“But Matthew will fight this just like his big brother.
“This is the toughest, hardest thing anyone could ever go through but 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.
Now the couple are planning to take Marc to Minnesota in America to undergo a bone-marrow transplant which would prolong the life of their sick son — but they need to raise over $850,000 and as time runs out, they are appealing for immediate donations.
Damien 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.”
The Elliotts are just the fourth family in the province to experience the disease.
Adel and Damien know it’s clutching at straws but they are determined to do what they can.
Adel added: “Our little boys are fighters and we hope and pray that they will get through.”
A spokeswoman for the Erne Hospital said yesterday: “Due|to patient/client confidentially the Western Health and Social Care Trust cannot comment|on individual cases or treatment.”
HERE’S HOW YOU CAN HELP!
Join Marc and Matthew campaign, help with sponsorship or donate money by phoning Karen Elliott on 028 663244 84 or Judina Tummon on 028 66325674.
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Comments
28 Comments
hi my name is mrs. cindy ann lightfoot , and i also know of this condition ALD- ADRENOLUEKODYSTROPHEY. adel and damien, my family and aldkidsyahoo,com will be praying for your family. our son jees carljames lightfoot , past into heaven 1-31-09 AT AGE 17. this condition hit our son at age 5 1/2 . when i told him that mommy was going to have to take care of him he said, " don't worry mommy! JESUS WILL TAKE CARE OF ME." his symptoms had already kicked in when we found out it was in our famiLY
Posted by MRS. CINDY ANN LIGHTFOOT | 02.07.09, 19:04 GMT
Mr. and Mrs. Elliot,
I am sorry to hear about your sons. I would donate money to your cause, if I could, but I have none to give. I must be as the apostle who said "Silver and gold have I none, but such as I have, give I thee...". My prayers are with your family at this time. Remember: "Prayer changes things; pray without ceasing". Love in Christ, Anna
Posted by Anna Daugherty | 29.06.09, 16:11 GMT
Wow, how very sad and tragic too. These people have my thoughts and prayers with them.
Posted by Tex | 29.06.09, 07:55 GMT
Is there an email address or a donation website site up?
Posted by Kelly | 28.06.09, 17:08 GMT
I lost my 1st child to a different leukodystrophy(krabbes)in 1976.I will be praying and spreading the word.
Posted by Grace | 24.06.09, 05:46 GMT
hi to all im marc and matthew nanny karen elliott i would like to say many thanks to all that has phoned called to our home with donations from all the elliott family and tummon family we are very greatiful with every ones prayers and thoughts we will get through this .
Posted by karen elliott | 22.06.09, 21:31 GMT
I have a 13 year old son diagnosed at the age of three. He has not had a BMT, but is on KTC Mustard Oil and a low fat diet.
He also has addisons which we give him cortisone and florinef for.
At the age of three I was told there is nothing you can do, and that the Dr.s woulnt be supprised if he made it to his next birthday.
He just graduated from Jr High school with his peers.
His VLCFA's have been normal and there hasnt been any further progression.
Posted by jamie | 22.06.09, 19:58 GMT
I contacted the number in the paper earlier today and they said you can donate money by going into any Bank of Ireland and saying it is for the Marc Elliott fund.
Please give whatever you can even if it is just a £1.00.
Posted by Victoria | 22.06.09, 17:05 GMT
There is a Facebook group set up called THE MARC ELLIOTT FUND, which people who live further afield may find easier to use to contact the family with information/donations etc.
Posted by Ryan | 22.06.09, 15:16 GMT
Yes, please open a PAYPAL account or something like it so we can make this campaign viral and raise awareness of this cause across the globe. it also makes it much much easier to donate as you can do it via email in a matter of seconds!
Posted by Dave | 22.06.09, 14:51 GMT
My heartfelt sympathy goes out to this family. What this family needs is the power of prayer and a miracle from God. Put your trust in him and he can work miracles through faith. I was told a year ago my father wouldn't survive 24 hours, and by the grace of God, faith and praying he is still here. You will be in my thoughts and prayers.
God Bless.
Posted by Paula | 22.06.09, 13:51 GMT
My thoughts and prayers are with the Elliott family at this time.
Never, ever give up hope & read Wendy's post below.
As a parent who lost a child to illness in the recent past, i'm well aware of the turmoil, fear, hope, dispair etc.. that goes with caring for an ill child.
Its important to stay strong and examine every option open to you, be it within the National Health service or elsewhere in the world.
Posted by Kevin | 22.06.09, 13:40 GMT
How totally panic stricken and devasted this couple must feel It is in everyones power to do something whatever capacity. pray hard for these two little boys. in view of all the negative stuff that is going on now, lets all do something positive.
love and blessings
to the Elliotts
God Bless
Eileen
Posted by eileen | 22.06.09, 12:03 GMT
Just to reiterate, can we get something online for donations as I am sure a lot of expats like myself who read BT would like to make a donation.
Posted by bps | 22.06.09, 11:15 GMT
To the Elliott Family
What a touching and sad story, being a father of two young girls it breaks my heart to see my own children sick with, what is in comparison to your situation, very minor things. My thoughts are with you and your beautiful children, i hope and pray that something can be done to help them live normal healthy lives.
Posted by Darren | 22.06.09, 11:13 GMT
I really do hope that something can be done for these two beautiful kids. It`s good to hear of other families offering some glimmer of hope. Well done to the Sunday Life for bringing this to the fore. Let`s hope that Adel and Damien get all the help and funding they need and that some of the other media outlets give this story the coverage it rightly deserves.
Posted by Cliff | 22.06.09, 10:05 GMT
P.S Everyone should copy this link and paste it into an e-mail and send it to as many people as you can asking them to donate at least £1 to help these beautiful children!!
Posted by Liam | 22.06.09, 10:05 GMT
I will say a prayer for both boys at tonights Clonard Novena. This is heartbreaking and I hope that a miracle does happen and these young boys live to a very old age!! God bless you and yor family.
Posted by Liam | 22.06.09, 09:09 GMT
Dear Elliot family,
My heart goes out to you as I can relate to you so very much! My 2 sons were also diagnosed with ALD. David my oldest passed away in 2006 after a 4yr. battle with the disease. He was not eligible for BMT. Back then in 2003, Drs. did not perform BMT on symtomatic boys. Sean my 4yr. old had a BMT done in April and is still in hospital here at Children"s hospital Minneapolis MN.
I am an Irish citizen by birth and have been in the US for over 20yrs. please contact me
Posted by Ellen Suppan | 22.06.09, 04:41 GMT
Can BT publish details of where to make a donation as I live in Australia and would like to help by making a small donation.
Posted by bps | 22.06.09, 03:40 GMT
28 Comments