Grover siblings have lived 15 years with cystic fibrosis
Jelena Grover feels every day like she’s drowning.
“That’s how it is for someone with CF (cystic fibrosis),” said her mother, Tammy Grover. “It’s hard seeing your children dealing with this every day.”
In Edmonton for the past two weeks, 15-year-old Jelena has been kept busy with the constant coming and going of nurses, doctors, respirologists, physiotherapists and social workers at the Stollery Children’s Hospital.
They kept an eye on her earlier this year, too, during a 30-day hospital stay. The family lives in Regina.
Soon Jelena will need a doublelung transplant. Her lung capacity is 30 per cent, down from 60 per cent in the fall. She is immune to the antibiotics that are meant to break down bacteria in her lungs.
Tammy is sharing their story because, she said, “I want people to know really what CF does to a person.
“You don’t get a day off from CF, there’s no remission . … There’s no cure, and there’s people who can die waiting for lungs. That’s why organ donation is so important.”
Jelena and her 18-year-old brother, Jaydn, were diagnosed with CF when he was three and she was a baby.
They both rely on physiotherapy, inhalers and medication, taking 30 to 40 pills each day, including enzymes and vitamins, because CF also causes digestive issues.
Every day the siblings use a respironic vibrating vest and PEP (positive expiratory pressure) mask, which help clear mucus from their lungs.
“They try not to let CF define them,” said Tammy, but “they’re worried about their health.”
While Jelena enjoys texting her friends and watching TV shows like Riverdale and The Originals, her illness makes some typical teen activities, such as going to the mall or the movies, more difficult.
“When they go out in public they have to wear a mask,” said Tammy. “If (Jelena) goes anywhere, she needs to take her oxygen, because she knows she’ll run out of breath.”
The disease has also impacted their six-year-old half-sister, Jenesis. She does not have CF, but has to be careful about bringing germs home.
CF is a genetic disease affecting about one in 3,600 children born in Canada, according to the nonprofit Cystic Fibrosis Canada.
Approximately one in 25 Canadians carries the abnormal gene that causes CF. When both parents have the gene, there’s a 25 per cent chance their child will have CF.
It was a disease Tammy knew nothing about until 15 years ago, and “it basically turned our world upside down.”
As a single parent, her children’s diagnosis meant she had to rely on social assistance, as it became impossible for her to work. To keep them as germ-free as possible, she home-schooled her kids. Jaydn just graduated high school. There have been frequent hospital stays over the years, for Jelena especially.
“It is very expensive, and it’s just emotionally draining as well, on both of us,” Tammy said.
“We usually have to stay in a hotel and we usually eat out because there’s nowhere to really cook.”
To help with some of those costs, Tammy Grover is hosting a steak night Saturday evening at Creekside Pub in Regina. She also has a GoFundMe account at www.gofundme.com/l7vsc4.