When Cammy was 14 months old, she and her cousin Olivia took a weekly toddler music class called Wiggleworms. I dreaded trying my best each week to put a smile on my face and pretend to have fun. I was puppet master to my 14-month-old, acting as her…
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My family is overwhelmingly grateful for the COVID-19 vaccination. We can breathe a little more easily now that our daughter Cammy is protected. We are infinitely thankful for the dedication of the people in the scientific and medical fields. The COVID-19 pandemic has been extremely difficult on all…
I used to think the stages of grief — denial, anger, bargaining, depression, and acceptance — only…
I was 31 years old and eight months pregnant when our daughter Cammy, not yet 2, was diagnosed with Rett syndrome. Cammy’s grandparents picked her up for a sleepover, and that night, my husband, Billy,…
If you have a child that is diagnosed with a rare disorder, you’ll likely find yourself asking questions like, “How did I get here?” I’ve heard people say that “God only gives you what you can handle.” Well, apparently, God thinks I’m a badass, because…
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- My daughter with Rett syndrome will never ride Medusa — and neither will I
- Learning to view mobility aids and other medical equipment as vital tools
- Daybu wins approval in EU as region’s first Rett syndrome treatment
- Rett syndrome as a windowless warehouse, and my daughter inside
- Neurogene gearing up to apply for approval of Rett gene therapy
- The surgery for scoliosis that went frighteningly awry, Part 3
- Partners team up to test Rett syndrome treatment in primates
- The surgery for scoliosis that went frighteningly awry, Part 2
- Manufacturing deal prepares Rett gene therapy for potential U.S. launch