The loss of two baby daughters to a rare genetic disorder has intensified a sense of questioning in Jim O'Brien. "What, really, is the difference between Travellers and settled people? Whatever you're going though in life," he says, "I'm going through."
Sitting in the office of the Bray Traveller Development Network, which he helped found, he describes growing up in Dalkey, Co Dublin, overcoming the name-calling most Travellers suffer at school, earning respect as goalkeeper in the local GAA football team, getting various jobs and, at 18, marrying Ellen, the girl he had been going out with since he was 12 - mostly happy memories.
He goes on to describe the birth of their first child, a son Paddy, in 1987, getting a local authority house in 1989 and having a daughter, Carmel, in 1989.
"In 1992, our daughter Ellen-Theresa was born. She was a very sick child, used to throw up her bottles and spent a lot of time in and out of Crumlin hospital. We knew she was sickly but had a good future mapped out for her."
Ellen-Theresa and her sister Brigid-Theresa after her both suffered from Leigh's syndrome, a rare inherited neurometabolic disorder characterised by degeneration of the central nervous system. Usually beginning between the ages of three months and two years, its early symptoms include poor sucking ability, vomiting and continuous crying.
At first, the young parents were told their daughter had recurrent pneumonia but after a scare where their GP told them to take her "straight to Crumlin", they found she had Leigh's syndrome.
At the hospital, he says, he and Ellen felt "pushed to one side" by medical staff.
"They took Ellen-Theresa from us, told us to go home after about 31/2 hours. Eventually we were told she had Leigh's syndrome and the hospital organised a nurse to be on duty with her round the clock.
"It was a massive struggle for three days, Ellen was drained and exhausted. At about 10 p.m. the public phone rang outside the house, which I was waiting for and the nurse said there was about an hour of our daughter's life left."
He went up to the hospital where, after about 20 minutes, the nurse "tapped" him on the shoulder. "James, she's gone," she told him.
Ellen was "craving another child". She had two miscarriages before the birth of BrigidTheresa in 1996. Born in Holles Street, she was "grand" for two weeks until she was also diagnosed with Leigh's at Temple Street Children's Hospital.
"The crying was 18 hours out of every 24, her breathing wasn't right, you'd know something was wrong," says Jim.
She was to end her 18 months of life in her parents' arms at Temple Street hospital. "She let out a massive breath at the end and just died in our arms. She had thick black hair and massive eyes, a picture of health to anyone looking at her," he says.
He and Ellen have since had another daughter, Anne-Marie, who is now one.
"She's not walking or crawling like she should be, and is on a lot of vitamins to help her. It's a long road ahead of us but we think she will have a longer life. We have, though, decided not to have any more children.
"There is a lot of tragedy around health among Travellers," he goes on. "Personally I would say it is because of neglect more than anything else. Travellers have lived in terrible conditions and are even afraid to go to doctors because, well, doctors are members of the settled community."
He says the settled people who know the family are "very supportive".
"A large number would know us and our problems. A large number know I suppose that whatever they are going through in life, we as Travellers, are going through as well."