Whether we realize it or not, we carry someone through on a daily basis. A dad makes breakfast for his son to carry him through final exams. Teammates cheer from the sidelines to carry their team through to the end zone. A friend delivers coffee to carry a mom…
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For parents of neurotypical children, summer should be easy, busy, and carefree. They might take their kids to the pool and watch them jump off the diving boards, zip down the waterslides, and splash in the water while parents sit nearby on lounge chairs. Parents might look out the window…
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…
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…
Recent Posts
- Feeling adrift following the end of Camp Communicate
- Parkinson’s drug shows potential for Rett breathing problems in mice
- A casual chat about Rett syndrome, then a surprise in the mail
- Blocking cellular stress protein may help ease Rett symptoms
- 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