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EB fight in memory of brave Aaron

Thursday, 24 April 2008

ON October 30, 2001, a Northside teenager died after battling throughout his short life with a very distressing and painful genetic skin disorder.
In 1985, Aaron Fynes was born with Dystrophic Epidermolysis Bullosa (EB), which causes skins layers and internal body linings to separate and blister at the slightest touch.
The illness came to major prominence a few years ago following the English TV documentary titled ‘The Boy Whose Skin Fell Off’.
The heartbreaking story charted the remarkable life of Jonny Kennedy who was born with the same condition as Aaron.
This year an Irish support group set up to help parents whose children have EB is celebrating its 20th anniversary.
Dystrophic Epidermolysis Bullosa Research Association (DEBRA) Ireland was founded in 1988 by a group of parents, including Aaron’s mother, Maria.

Thanks to support from the public, the association has been able to provide research into finding a cure for EB; general support, information, advice and help with welfare concerns and respite care; and support to the development of the specialist EB Nurse Service at St James’s Hospital and Our Lady’s Hospital for Sick Children, Crumlin.
It’s a far cry from the mid 1980s when Maria Fynes and her husband, Val, were faced with the trauma of having to watch their first child suffer terrible pain.
“Cases of EB were rare and it wasn’t known at the time,” Maria told Northside People.
“We had nobody to turn to and were absolutely devastated. There was no association to offer support.”
Aaron spent the first six months of his life in the Rotunda Hospital.
Over the next few years, he attended Great Ormond Street Hospital in London.
“It was much different over there,” recalled Maria.
“They did skin grafts and operations on Aaron, and taught us how to break open his blisters and drain fluid. They also had an association that could help.”
Aaron went to a Montessori school until he was 12-years-of-age and in the last few years of his life attended the Central Remedial Clinic (CRC) in Clontarf.
“He couldn’t go to mainstream school in case he got hurt and someone bumped off him,” explained Maria.
Despite the incredible pain he was suffering, Aaron, according to his mum, was a very happy little fella.
“He was an incredibly brave child, and very chirpy despite all that was wrong with him,” she recalled.
It took incredible strength each day for Aaron to face his life of pain.
“It was a traumatic time,” declared Maria.
“Every part of his body was affected; it was horrific. “Bursting his blisters and draining the fluid was awful.
“It took three hours in the morning and three hours in the evening to change his bandages.
“Even though you were giving 100 per cent, you felt absolutely helpless; the pain was relentless.”
Aaron was confined to a wheelchair all his life, as he couldn’t walk due to the blisters on his feet.
According to Maria, he accepted what was wrong with him.
“He was in Lourdes five times,” she said.
“We didn’t get the cure we wanted but we got acceptance.”
In his short life, Aaron developed a love for music.
At night, when his hands were bandaged, he would use his nose on the remote control to turn up his music to take his mind off the pain.
“At three and four in the morning, the music would be blaring because he had difficulty lowering the volume,” explained Maria.
“Aaron was also very religious and when he was really suffering, you would hear him during the night crying out to Jesus to help him get though his pain.”
To make life a bit easier for Aaron, the Fynes family moved from their home in Portmarnock to a bungalow in Ballyboughal.
Sadly, Aaron only had a year in the new house, which his family called ‘Aaron’s Haven’.
“We moved to Ballyboughal on October 30, 2000, and Aaron died a year to the day in 2001,” said Maria.
In the final year of his life, Aaron’s condition worsened and his sight failed.
It was another cruel blow for the brave youngster who died at Crumlin Hospital.
Following Aaron’s death, the Fynes family – Maria, Val, Rebecca (16), Nathan (14), Calebh (13), Keziah (7) and Isaiah (4) – have vowed, through DEBRA Ireland to help parents whose children are born with EB.
There are now DEBRA associations all over the world with the Irish one, of which ‘Prime Time’ presenter Miriam O’Callaghan is a patron, the second biggest after England.
Maria said: “We struggled for a few years but have come along way and have our own office in Pembroke Street.”
On May 16 a fundraising ball will be held in the Mansion House for DEBRA Ireland and the organisers are hoping to raise around e80,000.
Tickets for the ball can be purchased online. Email This e-mail address is being protected from spam bots, you need JavaScript enabled to view it or visit www.debraireland.org
Also, you can contact 6785044 for more information on DEBRA Ireland.
Meanwhile, DEBRA Ireland is also seeking women to run on its behalf in the mini marathon on Bank Holiday Monday, June 2.

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