Caring for our late daughter, Cammy, often made my husband and me feel like we were sleepwalking through the night. Cammy had profound special needs due to Rett syndrome, requiring us to get up in the middle of the night. Our baseline became so skewed over the years; it’s…
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When I was growing up, my parents never made a big deal out of graduations. In fact, my brother was at the beginning of the alphabet, so he walked across the stage in high school, received his diploma, and promptly exited through a side door, where we all met him.
In 2015, when a girl with Rett syndrome passed away, we for the first time experienced the death of someone we knew who’d had the disease. Our hearts ached for her family. I couldn’t help thinking we’d also be in that situation in the not-so-distant future. Months later, the…
Rett syndrome robs a person of the ability to walk, talk, use their hands, and many other actions that most people, myself included, take for granted. While raising our late daughter, Cammy, who had the disease, I’d sometimes let my mind wander to the question, “If she could have…
My husband and I both grew up Catholic and attended Catholic schools from the first grade through high school. Both our daughters were baptized. Because they attended public school, we had to look for outside religious education when it was time for them to receive their first Communion. Unfortunately, the…
When my late daughter, Cammy, was diagnosed with Rett syndrome at 20 months old in 2011, we grieved the loss of our perfect child. After learning about Rett and everything it can rob a child of, we worried Cammy would never have the opportunity to enjoy many typical childhood…
I think most children in the U.S. look forward to getting their driver’s license on their 16th birthday. I know I did. But when our oldest daughter, Cammy, was diagnosed with Rett syndrome at 20 months old, our dreams for her to have typical experiences like that vanished. Knowing…
Winters in Illinois, where I live, always feel so long. I’ve felt seasonal depression around this time for several years now. I suspect that the absence of sunshine and warmth affects my mood, energy, and anxiety. When this seasonal depression is added to the grief I feel over…
As an adapted physical education teacher, I travel to multiple schools. This year, I’m visiting five schools, with students ranging from preschoolers to eighth graders. I’ve been slowly sharing with colleagues, when it feels right, the story of my oldest daughter, Cammy, who passed away just over a year…
Winter break always brings me back to December 2010, when all I could think was, “This will be our last Christmas and New Year’s without an official diagnosis for Cammy.” We’d spent several long months going to appointments and therapies, trying to figure out why our 20-month-old daughter, who…
Recent Posts
- FDA approves Daybue Stix, drug’s powdered formulation, for treating Rett
- My youngest daughter has now lived longer than her older sister did
- Severe epilepsy increases care needs for people with Rett
- Gene therapy NGN-401 leads to functional gains in Rett syndrome
- New study links Rett energy problems to specific gene mutations
- A Rett syndrome clinical trial was our way of paying it forward
- Partners to design AI-based gene editing therapies for Rett
- Rett gene therapy trial starts dosing patients
- Iron-fueled death of cells may drive Rett syndrome damage: Study
- How Rett syndrome affected my children’s birth order traits