Why my husband continues to fight for a cure for Rett syndrome
Serving on the IRSF's board of directors is a way to honor our daughter's legacy
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When our late daughter, Cammy, was diagnosed with Rett syndrome in 2011, our family entered a world we knew very little about. Like so many families receiving a rare disease diagnosis, we had endless questions, and it was difficult to find answers.
Over time, the International Rett Syndrome Foundation (IRSF) became an important part of our family’s journey. The organization connected us with other families, provided resources and support, and perhaps most importantly, gave us hope that research could one day change the lives of girls and women living with Rett syndrome.
For my husband, Bill, that hope eventually turned into action.
Bill joined the IRSF’s board of directors in 2018 and proudly served through 2024. He wanted to represent Cammy and our family, but his reasons for serving went beyond simply being the father of a child with Rett syndrome.
He respected the IRSF’s mission and wanted to help advance it. He wanted to better understand the research being conducted and learn how scientists and researchers were thinking about potential treatments and ultimately a cure.
Serving on the board wasn’t always easy. It required a significant commitment of time and energy, including helping to plan the national conference and working through the many decisions that come with a large organization. But Bill considered the work worthwhile.
Rett syndrome doesn’t discriminate. It doesn’t care about a family’s income, location, background, or circumstances. The resources available to families can vary tremendously.
Bill recognized that he was fortunate to have a job that allowed him flexibility, as well as the support of his company and co-workers. He knew that not every parent or caregiver had that same luxury.
For Bill, board service was one way to use the opportunities he had to advocate for families who might not have the ability to do the same.
Then, on Dec. 13, 2023, our world changed again.
Cammy died from complications of Rett syndrome at just 14 years old.
There is no way to adequately describe what it means to lose a child. For years, Rett syndrome had been something we fought alongside Cammy. It shaped our family’s life, our decisions, and our hopes for the future. After she was gone, the fight did not disappear.
Neither did the desire for a cure.
Transforming lives
Cammy may no longer be here to benefit from advances in Rett syndrome research, but Bill knew that there were still thousands of girls and women living with Rett — and thousands of families hoping for a different future. He also knew that Cammy’s story didn’t have to end with her.
“After Cammy passed away, I knew I still wanted to fight for a cure for Rett syndrome,” Bill shared. “Rejoining the IRSF board is the perfect way to continue that fight and honor Cammy’s legacy.”
His decision to return to the board is about the future and the past. It’s about the girls who are being diagnosed today and the families who are just beginning the journey we know all too well. It’s about supporting research that could lead to treatments and one day a cure.
But it’s also about Cammy.
Serving on the IRSF board gives Bill a way to continue doing something he began years ago as a father who simply wanted to understand his daughter’s diagnosis. What started with questions about Rett syndrome evolved into advocacy, board service, and a commitment to helping move the research forward.
Cammy taught our family that a diagnosis does not define a person. She communicated without traditional speech, found ways to connect with the people around her, and made an impact far beyond what her doctors initially could have predicted.
Her life was far too short. But Cammy’s legacy doesn’t have to be.
For Bill, continuing the fight is one way to make sure that Cammy’s life continues to mean something to the Rett community. It’s a way to turn grief into purpose — not because the grief goes away, but because love gives us a reason to keep moving forward.
Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.
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