I was meant to die by 24..now I have a child & got married
Cystic fibrosis sufferers reveal new meds allow them to start families
CYSTIC fibrosis patient Billy O’toole never imagined having a wife or children, because he didn’t think he’d live past his mid20s.
Now, aged 38, the Mayo native is happily married to his wife Nikki, and they share a beautiful one-yearold daughter Naoise.
He said: “It’s a crazy journey because I was going to die when I was 17 to 24 and now I’m having babies and I’ve gotten married.”
Medication has drastically improved for people living with cystic fibrosis in the past few years, so the median life expectancy of those with the disease is evergrowing.
About half the people who now have the condition will live past the age of 40, while the median age in Ireland is currently 51.
Like Mr O’toole, many cystic fibrosis patients are living longer lives so they’re looking to start their own families.
COMPLICATIONS
However, many complications can arise for those with the illness when trying to conceive and some dangers are associated with women with cystic fibrosis getting pregnant and giving birth.
Most men with the condition are unable to have children naturally because 97-98% produce sperm but are missing a sperm canal.
Billy and his wife decided two years ago that they wanted to have a child, but soon realised they would need to do IVF for their best chance of conceiving.
He said: “It’s something that no one really talks about, I didn’t know anyone else going through IVF.”
A portion of the cost of Billy and his wife’s IVF treatment was funded by Cystic Fibrosis Ireland.
It is calling for donations as people with the condition are living longer lives and looking to start their own families with help from assisted reproductive technology.
The father-of-one was diagnosed with cystic fibrosis when he was born. His older brother died from the condition in 1967 when he was just 12 months old.
Growing up, Billy said the disease was always “the elephant in the room” and he never thought too much about his future, because he didn’t think he had one.
He said: “Surviving was my number one goal, having a family and a house, well I didn’t think about it. I would’ve grown up at a time when people around
Kids born with cystic fibrosis now are never going to know the struggles that we had and I’m delighted about that
me were dying of cystic fibrosis. Fifteen and 16-year-olds would go into hospital and get a bad infection and they’d die.” The Mayo native’s whole life changed when he received a double lung transplant at 24 years old, and now he looks forward to a much longer and healthier life.
He added: “[After the transplant] I could go out more, I didn’t have to go into hospital and the past few years it’s changed to I can have kids, I can have a house.
“And that’s where it’s going, kids born with cystic fibrosis now are never going to know the struggles that we had with cystic fibrosis and I’m delighted, I’m glad but we will always remember the struggles.”
Lydia Daly, from Dublin, also never thought she would live a long enough life to have children because of her cystic fibrosis diagnosis.
However, two years ago she began taking Kaftrio, a new drug that has been described as a “miracle” medicine for cystic fibrosis patients, and now she’s anticipating a much longer life.
Lydia, 32, and her partner have decided to go down the surrogacy route to try and start their family, and are currently awaiting to be assigned a surrogate from a clinic in Greece.
She said: “We did our egg collection and IVF procedure last year and got six embryos and we are on a surrogacy plan now in Greece.
“We are hoping to have a word on a surrogate soon, but when we do get one there is a whole court procedure you have to go through in Greece.”