Last year when I reflected on the amount of money we raised collectively, I was proud to have been a part of Maggie’s solution, her hope. This event, which takes place in LA on October 29th this year, is a Continue Reading
An upswing
When Maggie had pneumonia a few months ago I actually thought it wasn’t that bad. She was sick for a month but the pneumonia part only lasted a few days. But soon after the pneumonia was gone, she started experiencing Continue Reading
Science updates
The past couple of weeks have brought some fairly promising news in the Rett Syndrome community. I’ll share it here with links so you can become an amateur geneticist too. 1) Trofenitide – one of the drugs currently in trials Continue Reading
Special Olympics
The Special Olympics were in LA last week. I’d never been; though I have oft times considered volunteering. When we first heard about Rett Syndrome, my dreams of Maggie someday competing in the Olympics quickly faded. I mean, the daughter Continue Reading
The Letter S
For the longest time the letter s was important. It was how she said yes with a long extended “s”. It was how she hissed like a snake. It was how she responded to Brown Bear Brown Bear what do Continue Reading
Bad Night – the movie
I produced a movie that comes out today. It’s called Bad Night. I guess, if I had thought about it at the time, I’d realize the title has some relation to Rett Syndrome and all the bad nights Rett has Continue Reading
Idle Hands
I wish she had idle hands. She doesn’t She has hands that won’t stop moving. At times, like now, they won’t stop moving extremely violently. Right now she can’t control them at all. I watch as she stares at them Continue Reading
Golf tournament
A few weeks ago I went to a golf tournament in Northern California for Rett Syndrome and I made a video about it. It’s a great event, very well run, and I think as a result, I’m going to get Continue Reading
Father’s Day
We spent father’s day with my family on the East Coast. We’ve written about it before – how much she enjoys her cousins; and this trip was no different. I think there’s a special bond with family that she understands Continue Reading
