Dad who lost six children to CF urges Government to okay Orkambi

LOUISE WALSH

A heartbroken father who tragically lost six sons to Cystic Fibrosis says he is ‘praying with all his heart’ that new drugs to treat the condition will be given the go-ahead.

Paddy Peppard (78) from Trim recalled having to carry all the little white coffins to a local graveyard and bury them himself, when they died from Cystic Fibrosis in the 1960s and 1970s.
Five of his children tragically died between the ages of three and six months and a further son Tony battled the life-limiting condition until he was four and a half years old.
Tragically he and his wife Ann had to bury another son last November who suffered an acquired brain injury in a road accident at the age of four. Leslie, who did not have CF, died at the age of 48.
Now Paddy is appealing to the Government to approve Orkambi or any drugs that could treat Cystic Fibrosis so other parents will not have to go through the same torture he did.

Paddy and Ann Peppard were named as Trim Carers of the Year in 2009

He said: “Ann and I got married in 1959 and we were absolutely thrilled when our first son Patrick arrived in 1961 but just three months later, we lost him to CF. A year later, little Andrew died at four months to the condition and then Ashby who put up a bit of a fight made it until five months.

“Tony arrived then and he put up a longer fight until he was four and a half years old. I fought like anything to save him and even brought him on the plane to Lourdes but I knew in my heart on the way back, I wasn’t going to have him much longer.

“He was such a beautiful little boy and so blonde and so alert. I remember he was in Crumlin Children’s Hospital and I reluctantly left to get some sleep in my sister’s house in Arbour Hill.

“I woke up in the early hours with an uneasy feeling and ran to the first phone box I could find along the quays to ring the hospital. The nurse told me that my Tony had only just died in her arms. It nearly broke me altogether. It was a terrible time.

“Then Richard came along and I remember hearing him in his bedroom breathing and I immediately knew he had CF too.

“The doctors told me back then to rub my tongue over the baby’s forehead for any taste of salt as a sign of of the condition He too died a few months later.

“I was also told to put on a white glove and take the thick mucus from the back of their throats.

“I was only young but I learned very quickly.”

Another son Laurence also died at six months.

“I remember having to carry all the little coffins up to Newtown Cemetery in Trim and wonder why it all was happening. I just couldn’t understand.

“There was no priest at the funerals. I did approach a priest and ask him to come to say a few prayers at the cemetery when I was burying Tony but he said there was no need as the baby was an angel and was gone to God. I had to bury them  all myself.”

Paddy and Ann were named National Carers of the Year in 2009 for providing full-time care for their son Leslie who was wheelchair-bound since receiving an acquired brain injury following an accident at four years of age. Sadly he died just four months ago.

Despite all the tragedy and heartache, Paddy had three more children who he pushed to get tested for the CF gene when they got married.

“I drummed it into them to get tested for the gene and even made the appointments for them at Crumlin Children’s Hospital. Thankfully all the tests came back clear and I have eight healthy grandchildren now.

“I’ve been reading about the drug Orkambi and how it can help those with CF. God, I’m praying with all my heart that the Government make a deal to enable its availability.

“If it existed years ago, it may have saved even one or two of my babies. I only know what we have had to live through and that pain and despair is something I wouldn’t wish on anyone.”

Ahead of an expected deal on Orkambi in the coming weeks, Paddy added: “I’m an old guy now but there are so many young parents having to watch their children suffer each day. I would say to the Government, ‘oh please, don’t hesitate. Give these people what they need for their children. Give them hope and light.”