According to the statistics, a child of two carriers has a one-in-four chance of inheriting Friedreich’s ataxia. It is a lottery.
There are some families out there with parents who are blissfully unaware they are carriers and have four children unaffected by the condition. Then there are the unlucky ones, such as Margaret and Johnny Sinnott from Kilmore in Co Wexford who have five children, three of whom have inherited the disease.
Dominic was diagnosed in the mid-1980s when he was 15. At first, the family was told that he was suffering growing pains, and told to go home. When things didn’t improve he was sent to Crumlin Hospital, explains Margaret Sinnott. The diagnosis came as a big shock, she says. Dominic’s younger brothers, Jarlath and Damien, were subsequently diagnosed.
All three are wheelchair bound, and suffer varying degrees of disability. Two carers help out at the Sinnott’s home every morning. They assist Dominic, Jarlath and Damien with getting up, breakfast and exercising.
Physiotherapy is very important to “keep yourself going”, according to Damien, now 24, who was a keen hurling, football and soccer player when he was younger.
He became aware of the condition when he was about seven. “I kind of knew about it from my brothers, and knew I was going to get it. I hope to keep moving for as long as possible. I have physiotherapy every day and I try to get out as much as I can. Sometimes I get angry but not every day. It is not too bad, but it is very depressing being in a wheelchair,” he says.