LorCAN’S Story
THE parents of two-year-old Lorcan Maguire are moving over the border from Northern Ireland – just to get him on Orkambi.
The drug is not available in Northern Ireland, Wales or England but can be sourced for free by citizens of Ireland and Scotland.
Now mum Jen Banks, 34, and her husband Dermot Maguire, 45, are moving to Ireland from Downpatrick, in Co Down, to access Orkambi.
Jen told the Daily Express: “We have no choice. This is our little boy’s life.
“We expect this drug will give him years – but even if it gives him one extra day we would move.
“We do not want to leave our family, friends and work but we need these drugs.”
Cystic fibrosis patients in Northern Ireland depend on it being approved first by NHS England and The National Institute for Health and Care Excellence (Nice).
She added: “Adults and people in their 30s are dying right now and need it now to slow the damage down. With every single cold Lorcan gets we risk an infection that could damage his lungs.
“If he gets on Orkambi he would be well enough to live a normal life because it slows down the reduction in lung function.
“As it is… cystic fibrosis will take him from us probably before he is 50. We want him to have a family, a career, to live whatever dreams he has.” Jen added: “I hold Vertex in high esteem for researching cystic fibrosis and making these drugs.
“But what I don’t accept is them not doing everything in their power to make them available to all the adults and children who need them to stay alive.” Jen said they dreaded leaving family and friends to live elsewhere.
She added: “We have wonderful, wonderful care here.” She praised her son’s team in the children’s hospital and said it would be hard to leave devoted family.
“I would urge people to sign our petition,” she said.