By Amy Cleary (for The Irish Loop Post) | Vol. 12 No. 4 (February 21 2019)
Cystic Fibrosis is the most common fatal genetic disease affecting Canadians. It has no cure at present. The disease affects the lungs and the digestive system. The severity of the disease can differ from person to person, but the persistence and ongoing infection in the lungs will eventually lead to death.
Currently, there are 70 to 80 people in Newfoundland and Labrador with Cystic Fibrosis, according to the 2017 Canadian Cystic Fibrosis Registry Annual Data Report.
Twenty-nine-year-old Ernestine Roche is one of them.
“She’s a go getter,” said Yvonne Murphy, Ernestine’s mother.
Roche was diagnosed when she was 10 weeks old with Cystic Fibrosis.
“My daughter has CF in her lungs and pancreas,” said Murphy.
That hasn’t stopped Roche from living her life.
“Ernestine was a PCA (personal care assistant) for Eastern Health for two years (before) she got unprovoked blood clots in her lungs and had to resign her position,” said Murphy.
But Roche carried on with her life, continuing her education and becoming an executive office administrative assistant, specializing in the medical and legal field.
Then things began to get worse.
“Ernestine was diagnosed as end stage Cystic Fibrosis,” said Murphy. “It was determined that her lung function was 30 per cent or less. She’s a candidate to be put on the lung transplant list.”
Newfoundland and Labrador has five cystic fibrosis clinics which are funded by the Cystic Fibrosis Foundation.
“We have a pediatric and an adult (clinic) at the Janeway and Health Sciences,” said Lisa Weatherhead, the group’s regional executive director. “Those clinics do not do lung transplants.”
Weatherhead says that once a patient is diagnosed with Cystic Fibrosis and are qualified for a lung transplant, they must move to the mainland.
Roche is currently in Mississauga.
“I’ve never left home to go outside the province and stayed anywhere for a period of time,” said Murphy. “So, it was new to me. It was new to her.”
Roche has been waiting for a double lung transplant for the past year. Her family never imagined it would take this long.
“We thought she was going to be back home under a year and never imagined she would be waiting this long,” said Murphy. “The costs just continue to accumulate because it’s a longer period of time than we expected.”
Murphy decided to take on the cost of her daughter’s medical care by doing what she knew best.
“I was always into music,” said Murphy. “I was running around singing in bands and playing on ferries.”
When Ernestine was eight years old, her lungs collapsed. Murphy had a choice to make.
“I had to make a decision,” said Murphy. “So, I just quit.”
Now, ironically, Murphy finds herself chasing her own musical dreams again.
“It was always my dream to do a CD,” said Murphy.
Murphy has written a CD to raise money for her daughter’s medical needs. The CD includes two cover songs and 11 original songs. All the proceeds for the CD go towards Ernestine’s medical costs. The CD can be found on Yvonne and Eric’s music page.
“My daughter was the main reason why I did it,” said Murphy.