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…
Recent Posts
- What would fly for my daughter with Rett syndrome on Halloween
- ‘Rett-like’ label may offer little guidance for patients, study finds
- Taking care of a child with Rett is tiring, but not as much as having it
- Why my husband continues to fight for a cure for Rett syndrome
- ‘Alternative’ genetic cause for Rett found in case of Swedish girl
- How ‘Silent Angels’ and Julia Roberts put Rett syndrome on the map, part 2
- Targeting brain receptor yields little benefit in Rett syndrome mice
- How ‘Silent Angels’ and Julia Roberts put Rett syndrome on the map, part 1
- Supporters urged to ‘go one step further’ this Rett awareness month
- Extra attention from a color avalanche gave my daughter a reason to smile