herald

Monday 20 November 2017

'Crippling illness left people thinking I was drunk' - dad

DUBLINER Barry Rice lived with Friedereichs Ataxia (FA) for 15 years before he was diagnosed.

For years, people often thought he was drunk because of his symptoms.

FA is a genetic condition with similar symptoms to Motor Neurone Disease - sufferers often have balance problems, difficulty speaking and will eventually have to resort to using a wheelchair.

Patients are usually diagnosed in their teens but Barry (34) was a late-comer to the disease.

Barry didn't find out until January 2013, aged 32, when his first-born was just three-months-old.

"It was scary when I first found out," Barry told the Herald. "But it was also a relief because I'd been searching for an answer for so long."

"When I was younger I would be turned away from bars constantly for being too drunk - even when I hadn't touched a drop."

In the first few weeks after diagnosis, Barry was terrified to read that life expectancy for sufferers was 35.

But each case is different. "I could live to be 100," he said. He doesn't want to know what his life expectancy is.

"I use a wheelchair only when I have to, if I have to go a distance of more than 50 yards," Barry said.

Tests

The dad-of-one said he was terrified that he had passed the disease on to his only child - Ellen, who turns two in November, but tests have ruled that prospect out.

Barry said the news hit his wife Claire particularly hard.

"She was up the walls - absolutely distraught. But she has started to come around now," Barry said.

The family is staying positive and will soon have reason to celebrate.

"Baby number two is on its way in November," the delighted dad revealed.

"I do wonder if I'll live to see them in college but I try not to worry - what good would that do?," he said.

The inspirational family man has set up Cycle Ataxia, a charity aimed at raising awareness and funds and has raised €15,000 in its first year.

hnews@herald.ie

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