Last in a series. Read part one. In part one of this tale, Barry Ross Rinehart told us how his casual offer to help a stranger with slides for a talk about Rett syndrome led him to direct a full-length documentary, “Silent Angels: The Rett Syndrome…
An Excess of Lemons – a Column by Neil Genzlinger
First in a series. It’s October, which means it’s Rett Syndrome Awareness Month, which means it’s a good time to have an email chat with Barry Ross Rinehart. So I did, and he was gracious enough to tell me about the making of “Silent Angels,” a documentary…
Herewith another installment of the T-Shirt Chronicles, in which I relate episodes from our family’s life with Rett syndrome as represented by garments in our ridiculously outsized collection of T-shirts. Some of those T-shirts are mine. Some belong to my wife, Donna, or my daughter Abby, who has Rett…
National Grandparents Day was this past Sunday, and it was great to see social media photos and videos of grandparents supporting and loving their grandchildren who have Rett syndrome, the condition that my daughter Abby has endured for 29 years. Abby, alas, has to be content with my…
This was our second summer without Camp Communicate. Our daughter Abby, who has Rett syndrome and is nonverbal, never really got the full benefit out of the camp, which sought to encourage nonverbal kids to use their communication devices. But the absence of the camp has left a…
I confess that I am a T-shirt hoarder. I have dozens, many of them embarrassingly old. How bad is my habit? I am in my Social Security years, and I still have a T-shirt from my high school fraternity. And yes, it still fits, kinda. Occasionally I make an effort…
If, like me, you have a child with Rett syndrome and an older, neurotypical child, it’s easy to fall into the “she’ll never” cauldron of gloom. “She’ll never get two MVP awards in high school softball like her older sister.” “She’ll never earn three college degrees like…
The area where I live in central New Jersey seems as if it’s becoming the warehouse capital of the country. For a decade or two, warehouses have been springing up like dandelions, some with recognizable names like Amazon on their signage, others offering no clue to passersby as to who…
Last in a series. Read parts one and two. When our daughter Abby, who has Rett syndrome, went into a Delaware hospital 17 years ago for spinal fusion surgery to correct severe scoliosis, she had an allergic reaction to something partway into the operation. The…
Second in a series. Read part one. Seventeen years ago right about now, my wife, Donna, and I sat dazed in a Delaware hospital as a surgeon explained that he had been forced to abort the spinal fusion he was performing on our daughter Abby because she’d gone into…
Recent Posts
- 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
- What it’s like becoming the point person of a club no mother wants to join
- Case of woman, 63, shows approved Rett therapy may benefit older adults
- ‘G’ is for grandparents: Remembering how my parents embraced my child
- Mouse study offers clues to Rett syndrome mutation differences
- Feeling adrift following the end of Camp Communicate