Kiera can breathe easy thanks to breakthrough treatment

Drug Orkambi offers relief for young cystic fibrosis sufferer who now enjoys gymnastics and dance classes 

PORTLAOISE-BASED mother of two Louise Lynam had never heard of cystic fibrosis (CF) before doctors at Our Lady’s Children’s Hospital, Crumlin, did the heel prick test to determine whether her baby had it.

"I was in Crumlin with Kiera for 12 nights, so I had the time to research CF. I was devastated when the test results returned positive,” Louise says.

This was eight years ago and Louise quickly learned how to manage her little girl’s medication. A genetic condition, CF impacts multiple body functions, including breathing, digestion, and reproduction. "Kiera needs a lot of enzymes. She’s currently taking 22 to 25 tablets a day," Louise says. "I got on top of it. I knew how to do it after a month." 

Louise, a healthcare assistant in an emergency department,  is also mum to Jessica, 15.

Kiera Lynam

As a five-year-old, Kiera developed pseudomonas. "She became very ill with chronic lung infection," Louise says. "She had no energy. She was on a very strong antibiotic for a month, administered twice daily through a nebuliser. It took almost an hour in the morning and again in the evening. I’d do it before I’d send her to my mother and leave for work."

Two years ago,  life-changing CF drug, Orkambi, was approved following lobbying of the Government by Cystic Fibrosis Ireland. "About five months after Kiera started Orkambi, I saw the difference," Louise says. "She had her energy back. She was no longer run-down. If she develops a cough now, the mucus comes up straight away,  whereas, before, with physiotherapy, it’d take ages. She had to go on six or seven courses of antibiotics in 2018. This year, she’s had one so far. She’s so well, I have her in gymnastics and dance class."

Kiera Lynam

Cystic Fibrosis Ireland provides Kiera with an annual exercise grant for her gymnastics — exercise is imperative for people with CF to keep lungs clear and improve quality of life.

Since Covid-19 started, people with CF have been cocooning because of their high risk of contracting the virus. Cystic Fibrosis Ireland is in daily contact to help them and to provide them with information/advice, as well as support services, including access to online exercise and counselling.

Step it out 

Cystic Fibrosis Ireland is one of four children’s charities benefitting from Woodie’s Heroes sixth annual campaign, which this year has raised €263,935. Down Syndrome Ireland, Autism Assistance Dogs Ireland, and ISPCC Childline will also benefit.

With a fundraising goal of €250,000, Woodie’s colleagues and customers upped their step count and generously donated at the till, in-store and online

Woodie’s colleagues in Blackpool and Cork City, plus Woodie’s customers and suppliers, covered 384,400km from July 19 to August 16

Woodie’s colleagues, customers, and suppliers have raised €1,818,446 for Irish charities in the last six years 

Team of Woodie’s Heroes cyclists will journey nationwide (September 14-18), cycling 1,600km and visiting 35 Woodie’s stores to collect vital final funds that everyone has worked so hard to raise

Donate at www.woodies.ie