I’ve been taking a lot of flak for letting someone drape a giant snake around my daughter Abby a few weeks ago. And I’ll admit that, as part of my ongoing search for a therapeutic breakthrough for Abby, who has Rett syndrome, the experiment was a failure. The goat…
An Excess of Lemons – a Column by Neil Genzlinger
Twenty-four years ago this week, my daughter Abby sat 5 feet from one of the world’s most famous movie stars in a hearing room in Washington, D.C., as print and television journalists recorded the biggest media circus ever staged on behalf of Abby’s disability, Rett syndrome. The movie star…
Practically every parent of a child with a visible disability has a story about the time someone looked crossways at the kid in the grocery store or made a thoughtless or downright hateful comment. This story is the opposite of those. My wife, Donna, and I don’t take many…
It was just an overpriced Broadway bauble, so why has its demise made me so glum? Yeah, I broke our “Big River” coffee mug. I was putting it in the dishwasher yesterday and bumped it against the rack. The handle broke off in multiple pieces. We got the mug nine…
So much of human interaction is based on asking a question and getting a response. “How are you today?” “Did you have fun on your vacation?” “How’s the job going?” I’m still asking my daughter Abby questions every day, though she hasn’t answered one in the 29 years she’s been…
Winter seems to be over at last here in New Jersey. Rats. Abby and I never did get to go swimming in the snow. Twelve years ago, my wife, Donna, and I realized that our daughter Abby, who has Rett syndrome, was a year away from turning 18, which…
My daughter Abby has probably scored more runs than any player in the history of her baseball league. She’s also never won a game. She’ll continue to add to those impressive statistics next weekend, when the Miracle League of Mercer County, New Jersey, opens its spring season and…
The service organization Best Buddies International has had a campaign going this month to “End the R-Word,” as the subject line in an email it sent out a few weeks ago put it. Best Buddies, which creates social and job opportunities for people with intellectual disabilities, has been conducting this…
My last job at The New York Times, where I worked in various writing and editing positions for almost 30 years before retiring in 2023, was as an obituary writer. Almost all of the hundreds of obituaries I wrote were assigned to me by editors, who reviewed the daily list…
Our daughter, Abby, who has Rett syndrome, just turned 29. It’s the kind of number that makes a parent think, “Can that possibly be right?” And, “Good golly, we’ve been doing this for a long time.” Abby may or may not care about birthdays, but if she does, she’s…
Recent Posts
- How eye-gaze technology helped our daughter find her voice
- Mature nerve cells may tolerate higher MeCP2 levels, new study suggests
- Emotional well-being hit hardest in families managing Rett syndrome
- The great snake experiment. Also, goats.
- For the first time in years, Mother’s Day felt like a celebration
- Dosing underway in clinical trial of Rett syndrome therapy RVL-001
- The day a famous actress joined girls with Rett syndrome in Washington
- Targeting leptin may ease some Rett-like symptoms, mouse study finds
- The stranger on the beach who performed an act of real charity
- Imagining the moments my late daughter would now be experiencing