“It came gradually upon us and it wasn’t hectic, although Mia was put on enzyme supplements straight away,” says Lorraine, whose daughter is now age 6 and enjoys an active life at home and with her friends at Killygarry National School in Co Cavan.
According to Lorraine, “calm parents mean calm children”, but that doesn’t mean a child with the condition, which damages many organs including the lungs, pancreas, and the digestive tract, has to remain inactive.
Both parents ensure Mia enjoys a normal childhood, despite her condition. “She’s into everything, from hockey to soccer and if you saw her in school you wouldn’t pick her out as a child with a life-threatening illness.”
Mother and daughter were in Dublin yesterday to help launch CF Ireland’s annual 65 Roses awareness and fundraising appeal, along with former Ireland rugby international Paul Wallace, and Fair City star Jenny Dixon.
The charity’s chief executive Philip Watt called on the Government to upgrade key facilities for those with the disease at Dublin’s Beaumont Hospital, Cork University Hospital and University Hospital Limerick.
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CF Ireland also wants the introduction of ‘soft opt-out’ for donor consent promised in the 2011 Programme for Government.
“Since the start of the economic crisis in Ireland, we have seen progress in some areas of cystic fibrosis care but also significant cutbacks in services with staff shortages and delays in developing and opening vital hospital facilities.
“It continues to be the case that there are no Cystic Fibrosis specialist centres north of a line from Dublin to Galway, with people with cystic fibrosis relying on smaller shared-care centres for treatment. There is also the ongoing delay in the development of the new national children’s hospital where all children with Cystic Fibrosis will be treated.
“While we have seen a welcome increase in the number of Cystic Fibrosis lung transplants, it really has been a case of two steps forward and one step back.”
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