Paul and Caroline O’Sullivan with their three children, Louise, Érin and Megan at their home in Gort na Greine. Photo by Dermot Crean
By Dermot Crean
YOUNG Érin O’Sullivan looks like an ordinary, fun-loving seven year old girl who enjoys school and playing with her sisters, Louise and Megan at her home in Gort Na Greine near Gallowsfield.
But for Érin, life isn’t always ordinary and easy-going. She suffers from a condition, Ataxia-Telangiectasia (A-T), which affects only about 500 people worldwide. It combines the worst symptoms of muscular dystrophy, cerebral palsy, cystic fibrosis, immune system disorder and sufferers have a 1,000 times greater chance of getting cancer.
Her parents Paul and Caroline, who have been through hell over the years, before, and since, she was diagnosed, have decided to give something back to the organisation which has helped them so much.
Paul will take part in ‘The Big Grizzly Head and Beard Shave’ at Woodies DIY on July 26 in aid of the A-T Society, which helps families with children who have A-T and promotes and funds research to find a cure for the disease.
I visited the family at their home and spoke to Paul and Caroline about how Érin was diagnosed with A-T.
“When she started walking at about a year old, everybody said she looked like she was drunk,” said Paul. “She was wobbling, found it hard to keep her balance and fell over an awful lot.”
They took her to a doctor who said that it something that she would grow out of. But soon after, at her two-year evaluation, the public health nurse referred her to the early intervention group in April of 2009. Dr Sharon Condon, the paediatrician in the group, saw that something wasn’t right.
While they were waiting for an appointment with a physiotherapist that May, Érin went downhill fast with a fever.
“She had a fever one Monday morning and then she just deteriorated within two days,” said Caroline. Érin had a CT scan in Kerry General Hospital which came up normal so the family was sent to Cork Hospital for a series of tests.
“We thought we were going up for a day, we ended up staying a week. We call it the ‘week of hell’,” said Caroline. It came down to one test in the end, the Alpha Fetoprotein test.
“Normal levels are between 1-7 but Érin’s was in the 90s,” said Caroline. “This meant two things; A-T or neuroblastoma, which is cancer.”
A test found that she didn’t have neuroblastoma and the subsequent genetic’s test confirmed she had A-T. It turned out that Paul and Caroline are carriers of the A-T gene.
“The odds of the two of us getting together and having children are about 3,000,000 to one and the chances of us having a child with A-T is one in four,” said Caroline.
The A-T Society got involved straight away after diagnosis and have been incredible to the family ever since. There is no specific clinic in Ireland to deal with A-T sufferers, so they have to travel to England every so often with Érin for treatment.
“When Erin was first diagnosed we went over to the A-T Society and we thought her life was after ending. ‘That’s it, she’s going to have no life’ we thought. We met a lady there who put us in touch with a support group who helped us deal with the Erin’s disability. Because A-T is so rare, we couldn’t talk to anyone here about it or get advice,” said Caroline.
“It’s also given us hope for the future. We saw that a woman in her 20s with A-T in South Africa has cycled for her country in the Special Olympics,” she said.
Looking at Érin it’s hard to see that she is suffering from such a condition. She is thriving at her school, Scoil Eoin, thanks to a Special Needs Assistant whom Caroline describes as like “a second mother” to her and she loves playing with her sisters and friends.
“People look at her and think ‘there’ nothing wrong with her’, but when she gets tired she loses her balance. She needs to take a special drink to boost her weight because she wouldn’t eat as much as a normal child. Her immune system isn’t as strong, but she has been very good for the past year and a half and she’s as smart as any other girl her age,” said Paul.
“A simple cough for Érin could turn into pneumonia in a few days. She’s on a preventative antibiotic every two weeks since diagnosis and we think that’s what’s helping her. She’s a normal seven year old, but with limitations…and we live around her limitations,” said Caroline.
Now the O’Sullivan’s have decided to help out the A-T Society with a special fundraiser.
“We decided we wanted to give something back to the A-T Society for all they have done for us over the years. And it’s not just for what they’re doing for us as a family, they also provide funding for research to find a cure,” said Caroline.
Paul has been growing his beard for a year now and said his colleagues in Woodies have compared him to Tom Hanks in ‘Castaway’. Joe O’Brien of The Barber Shop will be doing the shaving on the day and they are looking for people to volunteer their services to do face-painting as well.
For more information on how to donate or for sponsorship cards, go to Caroline Cronin O’Sullivan’s Facebook page https://www.facebook.com/caroline.cronin2?fref=ts&ref=br_tf . You can also donate to an account BIC/’SWIFT aibkie2d IBAN no is : IE09AIBK93621983241184 or donate here at
http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=PaulOSullivan2
