Thanksgiving 2014

It's Thanksgiving weekend in Canada and we have an abundance of reasons to give thanks. I'm thankful to be able to see our extended families often and enjoy their love and support. I'm thankful to live in a safe and free and peaceful country with publicly-funded health care and excellent doctors, nurses, and clinicians. I'm thankful to live in a place where free education is available for all kids, regardless of gender or ability. I'm thankful for books and knowing how to read and learn. I'm thankful for technology and the engineers who designed and continue to improve eye-gaze technology. I'm thankful for my husband and kids, the sunshine and the harvest. I'm thankful for sleep.

The past six months have been difficult for Abby, with crazy-nervous-system symptoms and accompanying medical problems. Her orthopaedic surgery went well, but recovery was really rough. Things are looking up, though. She has been feeling much more like herself lately and she is walking around on her own. Her cast (hopefully) will come off soon! We are seeing smiles every day. And Abby's learning to do more with her eye-gaze device to communicate and show us what she can learn.

Heartfelt thanks to those of you who have once again given generously to support this year’s Run4Rett! Your donations make a difference in Abby's life and directly help others with Rett syndrome, too.

It was 10 years ago that my sister, Judy started the first Run4Rett in Milton. Great strides have been made since then, much of it due to funds raised by people like you. Your donations fund conferences, clinics, research and education for families and clinicians. This year, O.R.S.A. established a nation-wide patient registry so our girls can soon be part of clinical trials for treatments for Rett syndrome. Next month, I'll go to the Rett Syndrome Communication Workshops, thanks to a large donation from the Edwards Charitable Foundation, given to help more people access and learn to use communication technology. We continue to make use of your fund-raising dollars to access the Rett Syndrome Clinic in London, ON. This has been a big help as we have worked to figure out many of Abby's recent medical challenges. Every dollar makes a difference!

I'm thankful for Team Abby! Happy Thanksgiving!

10th Annual Run4Rett

This year, we'll be celebrating 10 years of support for Team Abby and the Ontario Rett Syndrome Association! The 10th Annual Run4Rett is scheduled for Sunday, September 21st, 2014.

Here are the quick links:

• Sponsor Team Abby
• Register online
• Print registration brochure and pledge sheet
• More info at the O.R.S.A. web site

Abby Update:

During the past several months, Abby has had several very bad days. She's also had a lot of very good days. We're still trying to figure out how to prevent the nervous system problems which can cause her a lot of pain and anxiety. Hopefully, her good days will start to prevail.

Abby continues to amaze us with her Tobii eye-gaze system. When she is unwell, she can tell us more specifically what's wrong. When she is feeling well, she is keen to learn more and present her research, tell us what she wants to do or what she thinks, entertain us with her music videos or tell us some jokes. She is also participating in a new research study on communication using eye-gaze technology. 

On September 2nd, Abby will be having orthopaedic surgery on her leg. It is similar to a surgery she had six years ago. The surgeon will be straightening her leg, just above her right foot. This will help her to continue to walk well. Lately, walking's been tough and Abby has become nervous about it. So, this year, Abby won't be running around the 1km route, but she'll be happy to have you come sign her cast! 

We are grateful to all those who donate or come out to participate in the Run4Rett! If you've never made the trip to Richmond Hill, please consider joining us! Team Abby has grown over the years to include friends of friends of friends and family. Thanks for helping to raise awareness and funds! Thanks for being a visible crowd of support for Abby and all the other girls and women with Rett syndrome.