The Kate Foundation for Rett Syndrome Research is a 501(c)(3) nonprofit organization dedicated to raising research funding and awareness of Rett Syndrome and other MECP2-related disorders.
Sleeping soundly for girls with Rett syndrome can be elusive. Talk to any Rett family and many will tell you sleep quality comes in waves. You can have a good night, a good week, a good month even and then it can all far apart on you. Last month, Kate woke up at 3:15 am every night for a week. It wreaks havoc on her days and ours. It’s been better lately, but it leaves you wondering if tonight is the night the train comes off the slumber tracks.
When I ran across this 2-minute 43-second film, I couldn’t help but think of Kate sleeping. On those nights when her body is quiet and her brain free from the crackle of Rett syndrome, where does her imagination take her?
We are proud to announce the release of our 2011 Glass Ornament Set for Rett syndrome research fundraising! We appreciate all of the enquiries we’ve received this year from people who’ve bought the ornaments in the past and are interested in purchasing new designs. Thank you!
Four new styles are now available for purchase on our website:
www.katefoundation.org/buy_2011_ornaments.html
Possible gift ideas: The ornaments have been extremely popular among parents and families who have given the ornaments to teachers, therapists, caregivers and doctors. They’re also sought after at grab bag events, office parties and as hostess gifts for holiday parties.
The ornaments are $35.00 each and shipping is FREE! Shipping begins Nov. 29. Thanks for your support!
Our plans for Halloween night fell apart pretty quickly. We tried to give Kate dinner before going out Trick-or-Treating, but she just put her head down on the table next to her half-eaten grilled cheese and virtually fell asleep. People often ask us how Kate communicates, and that’s one of the greatest examples there is.
As best we can, we like to expose Kate to all of the possibilities out there for typical kids. We get very frustrated for her when her body won’t let her do even simple things, and that includes being too tired to go out Trick-or-Treating in our neighborhood.
This is where Kate’s school comes in. Three nights earlier, we attended an event that made the collapse of our home-based Halloween Monday plans insignificant.
Kate goes to a local school for kids with special needs. All of the children at her school have some degree of disability and the range is dynamic, from mild autism to profound physical, neurological and motor challenges. A few years ago, the school started an annual Halloween event called Trunk-or-Treat.
The concept is what it sounds like – instead of hopping door-to-door in our neighborhood – the kids move car trunk to car trunk in the school’s parking lot. A tailgate really, but with Snickers and $100 Grand bars. Keep in mind these are not empty blackened car trunks, but dozens of trunks elaborately transformed into Halloween dioramas (constructed by some talented parents). Lighting, cobwebs, moving parts, smoke, goblins with blinking red eyes, the whole deal. It’s a huge boon for all of the kids, most who have difficulty getting around. Flat, paved parking lot asphalt never looked so good. No stairs, curbs, or driveways to navigate. One family whose son is in a positional wheelchair built an incredibly intricate Batmobile around his chair. He looked like a pretty proud Batman sitting in that cockpit.
And Kate was a very proud Cowgirl Sheriff. Forty degrees with the wind blowing and she couldn’t have cared less. She seemed to love dressing up and seeing her schoolmates and teachers outside of school hours. She giggled most of the night moving car-to-car and when we finally got her home, she was so over-excited she wouldn’t go to sleep. Fine with us.
