We will support hospitals until a cure is found
By Aideen O'Flaherty
THE mother of an active and thriving seven-year-old boy who has cystic fibrosis is speaking out about her experience of raising him with the condition, ahead of 65 Roses Day – Cystic Fibrosis Day, which is next Friday, April 12.
Cystic fibrosis (CF) is a genetic disorder that primarily affects the lungs, the symptoms of which can include difficulty breathing and frequently coughing up mucus to clear the lungs as a result of reoccurring lung infections, while the digestive and reproductive systems are also affected.
Julie and Alex O'Herlihy.
Julie O’Herlihy (40), a teacher from Whitechurch in Rathfarnham, was 26 weeks pregnant with her son Alex when she was told he had cystic fibrosis, and she later found out that both her and her husband Ian carried a CF gene, even though there was no history of it in either of their families.
Julie told The Echo: “We knew very little about cystic fibrosis when Alex was diagnosed, there was no history of it in my or my husband’s family.
“We knew that it would affect his lungs and digestive system, and we met the team in Crumlin Children’s Hospital about it when I was pregnant.
“We were obviously terrified, knowing that our son would be born with a severe and chronic illness.
“It put a dark cloud over the rest of the pregnancy.
“Although we were extremely excited to meet Alex, we also felt fear for him when he was born.”
Alex was brought into the ICU for 24 hours after he was born, as he was in the ninth percentile for his weight as a result of cystic fibrosis, which inhibited him from absorbing fat, and after the 24 hours in ICU Julie and Ian got to take their son home.
The Cystic Fibrosis Team in Our Lady’s Children’s Hospital, Crumlin, then saw Alex for his first appointment when he was two weeks old.
Julie said: “We met with a physiotherapist, a dietician, a doctor, a nurse, a social worker and a psychologist at that appointment.
“Every two weeks for the first two or three months of his life we brought him to appointments in Crumlin.”
Alex, who is a first class pupil in Whitechurch National School, is unable to absorb fat, including fat-soluble vitamins A, D, E and K, as a result of his condition and takes digestive enzymes with every meal to combat this.
The young boy also does physiotherapy every day to break up the mucus in his lungs, in order to keep his lungs clear and to strengthen them, and he also started using a saline nebuliser at 18-months-old to help clear the mucus.
Alex takes between 25 and 30 tablets a day to manage his condition, but he doesn’t let it hold him back.
Julie said: “Alex is seven now. He’s never stayed a night in hospital.
“He loves sport – he plays football, rugby, cricket, and he swims. He also does drama.”
Julie said that it’s been nearly a year since Alex started taking Orkambi, a drug that breaks down the mucus that would otherwise sit on Alex’s chest, and it has made a difference to his day-to-day life.
“Orkambi treats the underlying illness instead of Alex’s symptoms,” explained Julie. “His energy has increased, his appetite has increased, and we’ve been able to reduce the amount of antibiotics he takes.
“It’s been almost a year since he started taking it, and he’s thriving. It’s lessened the dark cloud over our heads.”
The mother-of-one wants to make people aware of CF and the importance of research into CF ahead of 65 Roses Day, so-called because it’s easier for children to say ’65 roses’ instead of cystic fibrosis.
“It’s an invisible illness and, as a parent, people don’t see the sleepless nights, or how your heart skips a beat when you hear him cough – will it develop into something else?” said Julie.
“These are all things that the outside world doesn’t see.
“I want people to know how great Alex is at doing everything we have to do, and also the fantastic work of the staff in Crumlin.”
Julie added: “We want to keep supporting Cystic Fibrosis Ireland and all of the hospitals until a cure is found.”
The Children’s Medical and Research Foundation (CMRF) Crumlin announced, ahead of 65 Roses Day, that it is funding €293,579 into new cystic fibrosis research in Ireland, and you can donate to CMRF Crumlin at https://cmrf.org/donate.
People can support 65 Roses Day by buying a purple rose for €2 from volunteers on Friday, or by donating online at 65RosesDay.ie.
