Áine, from Sallins, Co Kildare, was given hope for the future last week when she started taking the ground-breaking medication Orkambi.
Áine was found to be a suitable candidate for the drug — it is for delta F508 patients, the most common CF mutation. The effects of the mutation can vary and for some people, like Áine, they can be very severe.
Áine was born with severe bowel complications. While still an infant, she had to undergo emergency surgery when her bowel burst. Thanks to the great work of the medical team at Temple Street Children’s Univesity Hospital, Áine started to thrive and put on weight and at just four months of age, was strong enough to undergo surgery to have her bowel injury reversed, and a few weeks later was able to go home.
Managing Áine’s CF is an ongoing challenge. As well as having to undergo chest physiotherapy every day, she is on a lot of medication and her enzyme intake has to be carefully managed.
Áine’s mother, Siobhán, used to be a senior hockey player and also loved playing soccer and tag rugby, but now she is content to simply get out for a jog or a walk whenever she can.
Her daughter loves sports and dancing and recently represented Scoil Rince Chill Dara in the team event at the World Irish Dancing Championships in Citywest, Saggart, Dublin.
“I am just so glad that Áine now has real hope for the future,” said Siobhán. “I watched her fight to survive. She does have a unique love of life; she won’t let anything stand in her way.
“I hope that Áine can go to college when she is older; she says she wants to be a teacher. I hope she can have a career and maybe one day have her own family.”
Áine’s brother, Liam aged three, unaffected by CF. Siobhán works part-time in human resources but looking after her children is her priority.
Both Siobhán and her husband, JP, were in Dublin yesterday for the launch of Cystic Fibrosis Ireland’s 65 Roses Day annual fundraising appeal, which takes place on April 13. Ireland has the highest incidence of CF per head of population and some of the most severe types of the condition in the world. It is estimated there are almost 1,400 people living with CF in Ireland.
“Áine’s health has improved over the years because of advances made in treatment and care and much of that is due to the work of Cystic Fibrosis Ireland,” said Siobhán.
“I would urge people to buy a rose for €2 or donate online at 65rosesday.ie.”
Almost all of Cystic Fibrosis Ireland’s funding comes from public donations and organisers are hoping to raise more than €100,000 for vital CF services this year.