Daily Mirror (Northern Ireland)
UPROOTING FAMILY IS ONLY WAY TO GET MY SON VITAL CARE
Mum tells of turmoil over cystic fibrosis drug
YESTERDAY
hear Lorcan has cystic fibrosis was absolutely devastating. “Treatment is unrelenting. It is like trying to go up an escalator backwards and knowing you will be brought back to the bottom again.
“With every single cold 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 he is probably going to die and cystic fibrosis will take him from us probably before he is 50.”
Jen said they dread moving to make sure Lorcan gets the treatment but claimed they were “desperate”.
She added: “Lorcan’s team in the children’s hospital is absolutely incredible and we do not want to leave them.
“It would be awful and all our family is here. My mum is trained to do Lorcan’s treatment and she is the reason we were able to go to London this weekend. It would be moving away from her and moving away from Dermot’s parents.
“I would urge people to sign our petition to make this available in Northern Ireland.”
Nick Medhurst, of the Cystic Fibrosis Trust, said the charity is campaigning for universal access to the drug, which he said would soon be approved for use in children like Lorcan. He added: “It is likely Orkambi will be licensed for children aged twoplus in the near future and this is an exceptionally important opportunity to treat the root cause of the disease earlier than before, helping to further protect good health status.”