Joy O’Donoghue and Katie Sheehan whose sons have been diagnosed with Cystic Fibrosis Picture: Adrian Butler
FOR long-time friends Joy O’Donoghue and Katie Sheehan securing access to Orkambi for their two sons is literally a matter of life and death.
For several years, both mothers have been living with the reality that they will bury their children who have both been diagnosed as having Cystic Fibrosis.
Joy’s son Jason (8), was diagnosed with CF when he was aged four-and-a half while Katie’s son, Michael (3) was diagnosed shortly after he was born.
”He was taken from me two hours after I had given birth to him and he had turned blue. He was brought to neo natal and then to Crumlin where they found out he had Cystic Fibrosis,” she said.
While Joy who is from Garryowen and Katie who is from Cappamore are good friends who regularly meet up, they have to do so without their sons.
“We are actually friends for years but now our kids can’t play with one another because they can’t be together because of the CF,” explained Katie who also has a daughter Nicole (8).
Both Jason and Michael require constant care from their parents and medical staff.
They each have to take a cocktail of daily medication and both also have to receive regular IVs.
The boys must also take artificial enzymes everytime they eat to help them properly digest fat and they are also restricted in the kinds of activities they can participate in, such as PE and playing in play centres.
“You have to get up, you have to get on with the medications, you have to give him his physio you have to be at his beck and call in case the school ring to say he has been sick,” said Katie.
While Jason currently has 64% lung function, his mother says there is no guarantee he will be alive this time next year given the nature of the disease.
“It’s a progressive disease which gets worse with age – the more bugs they get, the more flus the more coughs, the more colds the more aspirations – the more damage that is caused,” said Joy, comparing it to a ticking bomb.
“There is no guarantee Jason will be alive next year – Michael could live until he’s 72 – there are no guarantees with anything but this drug (Orkambi) is hope for the CF community,” she added
Katie says that securing Orkambi for CF sufferers in Ireland will prevent parents of children having to watch their children deteriorate and die.
“The reality is if we don’t start getting drugs into this country for our kids, our children are going to die, we are going to bury them – it’s as simple as that,” added Joy.