Croteau hopes to raise awareness of cystic fibrosis
by Sarah Fay Campbell
For 17-year-old Cole Croteau, mornings consist of breathing treatments, disconnecting his feeding bag and sitting in his “vest.”
“It takes about two hours to use the nebulizer and then the vest, which shakes me and loosens up the mucus,” Cole said.
Cole has cystic fibrosis, a degenerative, lifelong, and always fatal disease that affects the lungs, small intestines, sweat glands and pancreas. He was diagnosed at the age of 3.
“They’re born sick and they die sick. Every day of their life they are sick and they hurt,” said Cole’s grandmother, Madeline Daly.
The most well-known – and worst – effect of CF is the scarring of the lungs (fibrosis) and the sticky, thick mucus that accumulates. The vest helps shake the mucus loose so Cole can cough it up.
In January, Cole had a feeding tube inserted into his stomach. He puts two cans of nutrient shakes in a feeding bag each night and several times during the day to try to keep his weight up.
Cole hopes to raise awareness of the disease, which is genetic, and affects roughly 30,000 Americans – including several in Coweta.
Currently, the median lifespan of patients with CF is 35. “People think, wow, that’s not bad,” said Cole’s father, Eric Croteau. “But 50 percent don’t make it past 18.”
In the 1970s and '80s, the average lifespan of a child with CF was just 11.
“It’s like an invisible disease,” said Cole. Most patients with CF don’t display outward symptoms until they are in the end stages of the disease.
Often, Cole’s cough leads to others giving him dirty looks. Daly recalled one instance in which she and her grandson were in the waiting room at the dentist's office. A woman nearby seemed bothered by Cole’s cough, glaring at both him and Daly.
“Finally this woman got up and left,” Daly said. “I try to explain that he is not contagious."
“We want people to know about CF, how bad it is. No one should have to go through this," he said.
CF is a recessive, genetic disease. Both parents must be carriers for a child to be born with CF. Parents who have one child with CF have a 25 percent chance of having a subsequent child born with the disease.
How does it feel to have CF? “If you pinch your nose and breathe through a straw, that is how it feels,” Cole said. “It feels kind of like drowning, that is how people describe it. It’s like you are drowning, but everybody around you is breathing."
As Cole gets older, the disease gets worse. On a pulmonary function test, his lung capacity is only 50 percent. “So that means, pretty much, half your lung is working,” Cole said. “My appetite has kind of left. That is why I’ve got the feeding tube in.”
Since October, Cole has been in the hospital nine times.
“They let him out for Christmas this year. Then, on Christmas Eve, he was trying to go to church,” Daly said. “He passed out because he can’t breathe. So we had to rush him back.”
Cole had to finish the rest of his junior year at East Coweta High at home, but he hopes to be back at school in the fall.
There is no cure for CF, but a double lung transplant can prolong a sufferer’s life by as much as eight years.
A transplant is a possibility for Cole in the future.
A few years ago, Cole and his family went on a duck hunting trip in Arkansas. Cole proposed the idea of helping other children with illnesses enjoy life by getting them involved in activities like hunting.
The Make a Wish Foundation, known for arranging similar trips for sick and terminally-ill children, does not currently include hunting as an activity in the expeditions the foundation sponsors.
The Croteaus decided to create their own organization, later dubbed Cole’s Commanders. It is a duck hunting guide service in which Eric Croteau is one of the guides. The organization sponsors free hunting excursions for sick children and wounded veterans. Any profits gained go toward CF research.
Cole and a friend who also suffers from the disease, Kyle Cole, are starting Cole’s Charitable Foundation to help other CF patients.
CF can be a lonely disease because many sufferers are unable to spend time in the company of other patients. Most CF patients have an infection with variants of Pseudomonas bacteria. Getting infected with someone else’s Pseudomonas can be dangerous.
Cole is only able to hang out with Kyle because he has received a lung transplant.
Having a child with CF can be expensive. A month’s supply of Cole’s medication and treatments can cost his family nearly $17,000. Cole currently benefits from Medicaid, but many families do not have this option.
According to Eric, several CF patients of working age eventually lose their jobs because of time spent away from work to be treated in a hospital. The Croteaus and several friends would like to raise money to offset the cost of treatment for less fortunate families. Christian Cullen, a friend of Cole who is close in age, started the Soles for Cole 5K run, now in its second year. The second annual run is scheduled for June 21 at Ashley Park in Newnan. The second annual Cole’s Commanders Golf Tournament & BBQ will be held on July 19.