Inspired by Her Two Daughters, Laura Bonnell Works to Educate Parents on Raising Children With Cystic Fibrosis
Twenty-two years ago, Laura Bonnell, a radio news reporter, was on the road to a breaking news story when her phone rang. It was her infant daughter’s pediatrician. “You have to pull over,” she heard when she picked up the phone.
Laura had been expecting the call and knew immediately what the doctor was going to tell her. Her daughter, Molly, had cystic fibrosis (CF).
She was familiar with CF. Long before she had children, she had taken a break from her reporting career and took on a role in public relations for the Washentaw County, Michigan, United Way, working on a promotional piece involving a University of Michigan researcher living with CF. That same year, 1989, Dr. Francis Collins, who was then at the university and later became the director of the National Institutes of Health, helped discover the gene that causes CF.
When Molly was born five years later, she had remembered enough of what she had learned to suspect that her daughter's symptoms – constant hunger, a distended stomach, and a salty taste to her skin – were likely caused by CF.
“For one day, we cried,” she recalls. “And then we thought –what do we have to do to raise a child with CF? We have to learn everything we can, and then we have to get involved.”
Wanting Molly to have a sibling, Laura and Joe decided to have a second child. Laura recalls thinking at the time, “what are the chances that our second child could have CF?”
But the odds of having a child with CF when both parents are carriers is 1 in 4.
Their daughter, Emily, who is now 19 years old, was diagnosed with CF at birth.
Laura and her husband became involved in the CF community, as they promised themselves after Molly’s birth. In 2010 they founded the Bonnell Foundation, a non-profit organization that provides tools to help families navigate the difficulties of living with CF.
But first, there was the task of raising two young girls with CF.
Molly was relatively healthy as a child, but from the time she was very young, Emily was constantly sick. This was hard for both girls – Molly felt guilty that she was the healthier of the two, and Emily often had to miss school, time with friends, and extracurricular activities. Still, the sisters supported each other and remain very close.
“I’ve never wanted to stifle my daughters. Time after time, I’ve had to hold back my own fears and let them take chances.” - Laura Bonnell President, The Bonnell Foundation
As parents, Laura says some of the challenges she and her husband faced were practical ones. Remaining adherent to treatment protocols was time consuming, and when the girls were sick they had to miss school and other activities. Meanwhile, she was constantly explaining to parents that they couldn’t bring their sick children to her daughters’ birthday parties or to playdates – the risk of infection was too great.
The emotional challenges were more difficult.
“It could feel very isolating,” she said. “We couldn’t have playdates as frequently as other families, and no one quite understood what we were going through.” It was also difficult to see her children in the hospital, she recalls, because she was constantly on guard to be sure they received the best care possible.
“Children with CF and their parents are amazingly tough,” Laura explained. “We have to deal with the reality of the end of life every day. Since my children were born, I’ve woken up every day and thought, are they going to contract something that’s going to get them really sick today? We’re living a really happy and full life, but that fear never leaves my mind. Most people don’t have to think that way.”
Laura’s experience raising two children with CF – and her difficulties finding a good source of practical and emotional support – were the impetus behind creating the Bonnell Foundation, which is now a thriving nonprofit.
The foundation’s mission is to provide families with tools for navigating life with CF, including connecting CF families, offering educational resources about CF, and sharing inspirational stories. The organization holds regular fundraisers to support its lung transplant grant and medical assistance grant programs, as well as its college scholarship program.
“For me, the foundation has been my therapy,” Laura said. “I talk to parents about raising children with CF, and I listen to their concerns and answer their questions. It just fills me up. Working to help people is so rewarding.”
Meanwhile, her two daughters, now young adults, are thriving.
Molly will soon graduate from the Parson’s School of Design with a degree in fashion design. Emily is studying at Michigan State, where she plans to major in advertising. Both girls have traveled extensively, including taking mission trips to Nicaragua.
“I’ve never wanted to stifle my daughters,” said Laura, of raising children with CF. “What is the point of living, if you can’t actually live? Time after time, I’ve had to hold back my own fears and let them take chances.”