‘I have no trust that health service can care for Eve’

CLAIRE BARNWELL does not trust the Government with her daughter’s life.

She says she and her family have to emigrate because Ireland cannot provide the healthcare needed to treat her youngest daughter’s severe cystic fibrosis when she reaches adulthood.

Tullamore-based Claire revealed she felt she had no option but to uproot her family and move to Canada so as to secure the future health of her four-year-old daughter, Eve.

She said the decision had been made because she did “not want to put any trust, faith or hope in the Government”.

“I have already given up on them,” she said. Claire, 24, decided along with Eve’s father, Brian Daly, to move to Canada after Eve had most of her right lung removed in surgery last January.

Eve has both the most common and the rarest genes found in CF patients and her health has deteriorated in the past year, prompting the decision to move to Canada, dependant on Brian getting a job there.

He has recently completed a Masters in engineering while Claire has a BA in English and geography. While Eve is currently receiving what Claire said was “the very best of care” at Tallaght Hospital, the prospect of poor services for adult CF sufferers has prompted the move overseas.

Claire said the life expectancy for CF sufferers in Canada was 47, as opposed to 21 here, where services have remained at a standstill.

“Things haven’t changed in the last 20 years so who is to say it will now?” Claire said during a call to RTÉ’s Liveline programme.

“I don’t want to leave my family and friends and Eve has just started school and we don’t want to leave but we have to. We are being forced out of the country.”

She said she had many friends either with CF or who looked after family members with CF, and the prevailing view was that services for adults were sub-standard.

“We talk a lot and listen to what they have to go through – it is heart breaking. We decided to move now rather than in the future, when it is easier for her to adjust.”

Eve is the first grandchild on Claire’s side of the family. Claire said: “They know what is best for her and they are going to support us.”