By Starrla Cray
DELANO, MONTROSE, MN Every day, Delano High School student Evelyn Day takes nebulizer and respiratory treatments, insulin shots, and dozens of pills just to stay alive.
“At the hospital, everybody knows me,” said Evelyn, who was born with cystic fibrosis (CF), a life-threatening disease affecting the lungs and other organs.
Although Evelyn has celebrated many holidays in the hospital, her 16th birthday Dec. 11 was spent at a considerably more scenic locale.
The Make-A-Wish Foundation granted Evelyn; her parents, Ed and Kate; and siblings, Joel, Eden, and Elsie, a Hawaiian vacation Dec. 8-15.
“We’re all very grateful for it,” Kate said.
Normally, the Day family doesn’t travel far from their home in rural Montrose, because of the challenges of cystic fibrosis.
Evelyn and her sister, Elsie, a third-grader at Delano Elementary School, both suffer from the recessive genetic disease.
“My husband has the gene and I have the gene,” Kate said.
Before they had children, however, Ed and Kate didn’t know of any relatives with cystic fibrosis. The only potential clue was a record of children on Ed’s side of the family dying of pulmonary issues in the 1800s.
“It was a complete shock,” Kate said.
Signs of cystic fibrosis
Shortly after Evelyn was born, she became lethargic and underweight, and was diagnosed with asthma.
“Within the first year of her life, she became more and more ill,” Kate said.
At 13 months, a pediatrician who suspected cystic fibrosis issued a sweat test, because people with CF have saltier sweat.
Those results, along with genetic testing, verified Evelyn’s condition.
Ed and Kate’s next two children were born healthy, but their youngest, Elsie, also showed signs of CF.
“Elsie was taking enzymes by the time she was 5 days old,” Kate said, adding that she was able to swallow pills by age 2.
Both Elsie and Evelyn have been diagnosed with cirrhosis of the liver as a result of their disease.
Evelyn’s liver was so severely damaged that she underwent a transplant in 2007, after 1.5 years on a waiting list.
“It’s very touching to get this gift,” Kate said. “We’re very grateful to the family that donated.”
A liver transplant is a complicated procedure, and requires medication so that the patient doesn’t reject the organ, according to Kate.
Providentially, Evelyn received a furry surprise to help her recover from surgery.
“This cat literally fell out of a tree into my hands,” Kate said. “We call him our ‘kitty from heaven.’”
Evelyn, a dedicated cat-lover, named her new black-and-white pet Oreo.
Living with CF
Family and friends have been another source of comfort and support.
One way people help is being careful about germs, because infections can cause serious lung problems in CF patients.
The Days often sit upstairs at church to avoid germs, and Evelyn and Elsie stay home whenever a high incidence of illness is reported at school.
Evelyn and Elsie are glad they can still attend school in Delano, although Evelyn has a modified school day, due to stomach pain and other ailments.
“People with CF can look very normal and healthy, but they have to fight every day,” Kate said. “It’s a lot of maintenance. These people will pass away if they don’t take care of themselves.”
Every night, Kate wakes up to make sure Evelyn’s blood sugar is OK, because of her cystic fibrosis-related diabetes.
“It’s similar to type 1 diabetes,” Kate said.
However, because CF patients need extra calories, Evelyn is not on a restricted diet. Instead, the food is counteracted with extra insulin shots.
Evelyn has also taken corticosteroids to improve lung function, but since it contributed to bone fractures, she has been taken off of them.
Now, she is on an IV infusion treatment, which is administered at home through a small medical device underneath the skin called a port-a-cath.
In order to manage their CF, Evelyn and Elsie both participate in 30 minutes of chest physical therapy (CPT) at least twice a day, wearing an inflatable therapy vest that squeezes to help loosen and remove mucus from their lungs.
When their daughters were too small to wear a vest, Ed and Kate had to do the sessions manually, by tapping on their backs.
Making the best of it
After Evelyn was diagnosed, Kate stopped working full time, and now has a small side accounting business instead.
“We’ve had to be creative,” she said, adding that Ed, who works at General Mills, is the breadwinner of the family.
Evelyn takes more than 50 pills each day, and Kate keeps it all organized with an Excel spreadsheet.
Taking two children with CF to Hawaii involved a lot of planning, but the effort was worth it.
“We went to Sea Life Park and I swam with dolphins on my birthday,” Evelyn said.
Someday, Elsie said she might apply for a trip to Florida through the Make-A-Wish Foundation.
Children with a life-threatening medical condition between 2.5 and 17 years old are potentially eligible for a wish.
Most wish requests fall under the categories of travel, job shadowing, meeting a celebrity, or a special gift.
In addition to the Make-A-Wish Foundation, the Day family is appreciative of the Cystic Fibrosis Foundation, which funds more CF research than any other organization.
“There’s no cure yet, but they’re working on it,” Kate said.
Medications and treatment have made the disease more manageable than in the past, however.
“Years ago, the lifespan was very short,” Kate said.
The gene that causes CF has more than 1,000 mutations, and some forms are more debilitating than others.
To learn more, go to the Cystic Fibrosis Foundation or Make-A-Wish Foundation websites.