The Bonnell Foundation Living with Cystic Fibrosis: I’m Laura Bonnell and This is My Story

BY LAURA BONNELL, EXECUTIVE DIRECTOR, THE BONNELL FOUNDATION

Since the age of 12, I knew I would be a news reporter — covering breaking news, feel good stories, and educating the public on so many different topics. The curiosity I had, and desire to get answers, is what made me a great reporter, and why people trusted me to get accurate information.

I had no idea at the time just how important being a news reporter would be in my life. In 1989, I took a year off from news reporting to do some public relations work for the Washtenaw United Way (WUW). That year the gene that causes cystic fibrosis was discovered. Dr. Frances Collins, of the University of Michigan (currently Director of the National Institute of Health) was recognized as a news conference for his contributions in the Genome Project that discovered the cystic fibrosis gene. I was at the news conference on behalf of WUW in case reporters needed more information — that news conference was my first encounter with cystic fibrosis.

Fast forward to 1993, I was newly married to my husband Joe and I had left TV reporting for an all-news radio station in Detroit. Life was perfect. Our first child, Molly, was born in 1994. She was happy and looked healthy, but something was wrong. I knew it. Molly’s pediatrician dismissed my concerns and told me I was a first time Mom, and that I should just “go back to work”. I listened to that doctor, but I just knew something wasn’t right. Molly had classic CF symptoms — greasy stool, distended stomach, and she tasted salty when we kissed her. In my mind, I was right about this. So, I demanded Molly be tested for CF — I was doing a lot of reading, and I was convinced that Molly had cystic fibrosis.

At 3-months-old Molly was given a sweat test (it measures the concentration of Chloride that is excreted in sweat — a standard test for cystic fibrosis). I was driving to a breaking news story when the doctor called me with the news I already knew: Molly had CF. The doctor apologized for not believing me. Since then, we’ve both learned a lot, and she is my friend to this day.

Diagnosis Day:

Joe and I sat on the porch, drinking a beer and crying. We had so much to learn about CF, but what we knew for sure was that Molly was going to have a normal life. This disease wasn’t going to hold her back. It was a difficult decision, but we decided to have a second child. We knew there was a 1 in 4 chance of having a child with CF with each pregnancy, but how could it happen twice, right?

Our second daughter, Emily, was also born with CF. We stopped at two, and we’re happy to have these beautiful girls in our lives.

Around that time, we got involved with the Cystic Fibrosis Foundation. We started fundraising and met other CF parents. There was so much to learn. In those early years I noticed not even the CF Foundation was able to do enough for CF parents — we needed mentoring from other parents, information, knowledge about CF clinics, financial assistance, advocacy and more. In that first year, I knew I had to start my own Foundation to make it happen. Ultimately, in 2010, after spending 16 years learning everything I could about CF, the systems, the responsibilities, and the realities of living with the disease, I did just that — I started the Bonnell Foundation.

Easing the Burden of CF:

The Bonnell Foundation: Living with Cystic Fibrosis began Living with cystic fibrosis began to help families cope with and understand the disease, access a like-minded network, ease the financial burden of CF, and generally do everything possible to help parents provide the most normal life possible for their own children — like we had always worked to do for Molly and Emily. Since then, we have given out about $500,000 in financial assistance, lung transplant grants and college scholarships to people all over the Country, and right here in Michigan. We have helped educate parents about CF and I have heard from hundreds of families that we helped them get to a diagnosis for their child with an educational article we wrote early on (Costco connection December 2010.Volume 25. Number 12). We helped families acquire PPE during the pandemic, have helped with dental costs, connected families with a support system who understands them, provided assistance for children at school (so they can carry digestive enzymes to school and have access to services needed for a child with CF), shared information about legislation pertaining to CF, and so much more.

My work as a news reporter allowed me to amplify information about CF. The radio station I worked at for most of my career, WWJ Newsradio 950, has aired public service announcements (PSA) about cystic fibrosis since Molly was diagnosed — even now, all these years later, they continue to do so. They allowed me to share my story and raise awareness in Michigan so that other families knew what to look for when they had a feeling something wasn’t right with their child.

My first hope with the Foundation was to help parents in the ways we needed it when our girls were young, my second was to raise awareness in the general population — we are so grateful for all of the volunteers, donors, and sponsors who have allowed to do both and continue to keep us strong.

Getting through the pandemic has been a challenge, the need is greater than ever. Please continue to help us in this fight to raise awareness and funds for this disease.

THEBONNELLFOUNDATION.ORG OR CALL 844.CYSTIC.FIBROSIS