Note: This column describes death and dying and may be triggering for some readers. Dec. 13, 2023, 4 a.m. I woke up around 4:17 a.m. to the sound of machines singing different pitches of beeps. I’d been in and out of sleep for the five hours I was actually able…
Guest Voices
Recent Posts
- Guest Voice: Like stars, the grief of losing my sister is always present
- The spa, the snow, and the Make-A-Wish gift that keeps giving
- Powder form of Rett treatment Daybue now widely available in US
- Opening day, and that time a ribbon wasn’t the only thing that was cut
- Fenfluramine reduces hard-to-treat seizures in 3 girls with Rett syndrome
- ‘Spread the Word Day’ reminds me of our own encounter with the R-word
- New study supports switching between Daybue liquid and powder forms
- Leaky blood vessels in the brain linked to Rett syndrome: Study
- A song, an obit, and a special needs parent meltdown
- The importance of raising awareness of disabilities at school