Why I Had to Take a Break From Fundraising to Maintain My Son’s Privacy

I began fundraising and raising CF awareness soon after my son, Aidan, was diagnosed as a baby. After years of successful fundraiser walks, Aidan asked me to stop — opening my eyes to the difference between being a mom of someone with CF and being the person who is living with CF.

| 5 min read
Megan Neville
Megan Neville
Aidan holding up a peace sign outside of his college building.

The fight to save Aidan’s life began on the day of his CF diagnosis at 8 days old. I gave him enzymes, I spent hours pounding his little lungs, I added salt to his bottles, I turned nebulizers on and off all day long and kept him away from germs as much as possible. But I felt completely helpless. I was trying to keep him healthy, but the truth weighed heavy on me … he needed more. He needed a cure.  

I attended my first CF Foundation meeting when he was 2 months old and that is when I learned about the volunteers who were working tirelessly to fund the science that would discover better treatments for CF. I knew I had to be part of this. I could fundraise, I could raise awareness for a deadly disease that received little attention, I could be a piece of the overall solution and possibly save my child’s life. I could gain power over a disease that made me feel completely powerless.

So, I took pictures of his beautiful face, his big blue eyes, his mop of blond hair, and I put it out there as a face of cystic fibrosis. I organized a team called Aidan’s All Stars that rallied around Aidan and our cause. Aidan was 8 months old at our first Great Strides walk. We had over 100 walkers wearing Aidan’s All Star shirts and raised over $24,000. That fueled the fire. For the next 10 years, we held fundraiser after fundraiser with Aidan’s face on posters, videos, and newspaper articles. I shared pictures of him in the hospital, attached to IV poles, swallowing hundreds of pills, and sleeping after surgeries — and it was working. People donated. People learned more about CF. People began to understand that although Aidan looked healthy, every day was a fight. His school held walkathons, his cousins held garage sales, his teachers organized sports tournaments … and all of the money raised went directly to the CF Foundation. I felt triumphant when our team came in first place year after year at Great Strides. But as we raised more and more money, Aidan became more and more reluctant to participate.

Our fundraising and awareness campaign had come at a price. As preteen and teenage years approached, it all seemed to backfire. I remember a particular breakdown when Aidan yelled at me “Because of you, people don’t ask me how I am doing when they see me. They only ask me how I am feeling.” It seemed like a trivial question to most, but he was absolutely right. People always asked how he was feeling. Not, “Hi Aidan, how are you?” It was always, “Hi Aidan, how are you feeling?” So even when he felt good, he was continually reminded that he was still a sick kid. 

When Aidan started a new high school out of town, looking for a fresh start, the students googled each other’s names. Aidan was angry; all the searches tied his name to CF. It was clearly time to scale back. We had some honest discussions during those difficult teen years. He asked that our family take a break from the Great Strides walks, he asked that I not post hospital pictures and he started hiding his pills from friends at his new high school. I felt defeated. But I tried to understand it. It became apparent to me that although we were both deeply affected by CF, my journey as a parent trying to save him and his journey as a person with CF were very different at times.

Was putting his name out there the right thing to do when he was too young to understand or give consent? Had I failed him while trying to save him? Was raising over $500,000 for the CF Foundation worth the privacy that my son had lost?

With growing maturity and increasingly open dialogue about his feelings and comfort level, I am happy to report that yes, it was worth it. Our efforts came full circle. Aidan moved into Villanova University this August at 17 years old. All his pills and equipment are out in the open. He met with his professors on the first day to discuss his illnesses. He will have a nurse in his room every third week for infusions. He decorates his IV pole. He tells his new friends that he has CF and is immunodeficient. He will Zoom into class from a hospital bed. And lastly, he has agreed to bring Aidan’s All Stars back — we will be walking once again for a cure in Great Strides 2023. CF will mean Cure Found and Aidan is now excited to be a part of that. 

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Topics
Fundraising | Parents & Guardians
Megan Neville

Megan is a first grade special education teacher with a master’s degree in education. She lives on the New Jersey shore with her husband, Dan, and three children. Aidan is a 17-year-old living with cystic fibrosis who just started his freshman year at Villanova University. Gavin, 15, and Grace, 10, are Aidan’s healthy siblings thanks to in-vitro fertilization (IVF) technology. Megan enjoys the beach and watching her kids play sports. She loves watching football, especially the Jets. She formed a fundraising team called Aidan’s All Stars, which has raised over $500,000 for the CF Foundation. She is incredibly grateful for the research that has led to so many advancements in CF care. Megan looks forward to Aidan’s young adult years and is excited to begin fundraising again!

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