Family ties: Fighting Cystic Fibrosis

It’s unlikely the outside world sees anything extraordinary about Meadow Brook’s Gagnon family. Of course, like many other books hastily judged by their covers, the world has it wrong. Laney and Gary Gagnon are two of the 280 community’s most outspoken voices in the drive to raise awareness about Cystic Fybrosis (CF), an issue that, for them, truly hits home.

CF is a genetic disease that causes mucus in the body to become thick and build up, which creates problems in the lungs and pancreas. According to the American Lung Association, approximately 30,000 Americans currently suffer from the debilitating disease, including two of the Gagnon’s six children, 15-year-old Jonathan and 6-year-old Allison.

“Jonathan was a year and a half when we found he had CF, and we had no idea what it was,” Laney said. “We had to Google it to know what the doctor was talking about.”

Following Jonathan’s diagnosis, the Gagnons had each of their other children screened and learned Allison was also afflicted. The Gagnons said it was a relief to catch it so early in their daughter, but frustrating as well. Newborn screening wasn’t available when Jonathan was born, and Laney said it made his diagnosis harder to understand and accept.

Each day, Jonathan and Allison Gagnon take 28-30 pills, perform breathing treatments and participate in chest physical therapy for 30 minutes. Therapy is increased up to three times a day when the children are sick. Laney said these time-consuming treatments are the most difficult part of the Gagnon’s efforts to give their children a normal life, especially since CF has no effect on their outward appearance.

However, the invisible condition can also be a double-edged sword.

 “It’s hard that people can’t tell that Jonathan and Allison are sick and sometimes forget that they’re sick,” Laney said. “They have a life-threatening condition. It limits them when they have to stay in the hospital for two weeks. It makes it rough on their studies and effects them when they miss out on school functions like school dances, games and extra-curricular activities.”

Allison, a first grader at Inverness Elementary, enjoys dancing and gymnastics.

“I don’t like getting IVs, but the doctors are really nice,” said Allison. “I like having visitors, getting gifts and getting Skittles when I‘m at (Children’s Hospital).”

Jonathan has adapted to his diagnosis and refuses to let it slow him down.

“I’m just like every other kid out there,” he said. “I like to listen to music, draw, watch TV, hang out with friends and go camping. I don’t let the fact that I’m sick slow me down. I’m pretty much the same as everyone else – I just have to take a lot of medicines and go to the hospital around once a year.”

All six children, including Jacob (12), Katie (9) and Michael (5), are active in sports and support one another.

Hannah Gagnon, a sophomore at John Carroll Catholic High School, is active in advocating for her younger siblings. In June, she attended Teen Advocacy Day for CF in Washington D.C.

“I want to raise awareness so it’s a more commonly known disease,” Hannah said. “I want people to understand what it is to live with CF and to be in a family that is affected by CF. My favorite part of the experience was being able to talk to other teens affected by CF and having other teens to relate to in that regard. It was also nice to sit down with state representatives and senators and be able to further the progress in raising awareness across the country.”

Laney Gagnon attended the event with Hannah and took great pride in her daughter’s efforts to make a difference.

“I enjoyed meeting other families that had a connection to CF from across the country,” Laney said. “It was also nice to feel like I had a voice with the congressmen and knowing that I was making a difference. I was making a difference in my children’s lives.”

While Hannah and Laney were attending Teen Advocacy Day, an announcement was made that a new, ground breaking drug for CF, Kalydeco, had completed its second phase of trials and has shown to dramatically improve lung function in CF patients. With the progression in modern medicine, CF treatments have increased the average life expectancy drastically and give the Gagnon family hope for the future.

“I think the exciting thing is that the progress being made in treatments and life expectancy is getting better. In the 1950s, the life expectancy for most CF patients didn’t surpass kindergarten. Now, the median age for survival is at 37, a number that gives our family hope for a better future,” Laney said.

Regardless of medical advancement, the disease does not define the Gagnon family.

“Obviously when we first received the diagnosis, it was devastating. Now, it’s a normal part of our lives and, with the support of our family, friends and our faith in God, we deal with it,” Laney said.

The Gagnon Family is active with Birmingham’s Cystic Fibrosis Foundation and participates in the Great Strides Walk every spring.