Sunday, October 17, 2010

Run4Rett 2010

Hooray for another successful Run4Rett!  

We could not have asked for a more beautiful, sunny day!  Over 300 people attended the event and enjoyed the family fun and fitness.  One of the runners who came to race (unrelated to anyone with Rett syndrome) commented that it was great to see how we all brought our kids out.  I wanted to tell him I wouldn't be there if it weren't for my kids.  I managed to complete the 5 km route along with many others, but I discovered I can no longer keep up to my 8-year old daughter.

The large crowd of supporters was a powerful reminder that we are not alone in the struggle with Rett syndrome.  We were grateful to have so many familiar faces on Team Abby, along with many new faces.  Caroline said to me later, "Mom, there were some people with Team Abby shirts on and I didn't even know who they were!"  I assured her they were not impostors.  Our support network keeps growing.

It was also great to see many of our Rett family friends, along with some new families.  The beautiful girls and women with Rett syndrome certainly seemed to know they were the centre of attention for the day.  Dr. Eubanks spoke about the many hopeful advances in research during the last year.  For the first time ever, there are clinical trials going on to study treatments for the symptoms of Rett syndrome.  Stay tuned for updates.

We are sincerely grateful to the whole organizing committee, under Juliana's direction, for planning and implementing such a worthwhile event.  The long hours of hard work and organization have certainly paid off.  Special thanks to Tim and Cindy, who coordinated the Silent Auction this year, to Trish, our T-shirt sponsor, faithful friend, and participant on Team Abby, and to all the people who helped look after Abby this weekend so the rest of us could run!

Abby was calm and tired during the event, but she managed to complete the 1 km route with her grandparents.  On the way home, she became more animated and seemed to be telling us all about the day.  She was quite excited!  At bedtime, she was very attentive as I talked to her about the day and about the many, many people who love her.  

We are all overwhelmed by the outpouring of support, both from the participants and from the many generous donors.  Heartfelt thanks to all of you!

Friday, October 8, 2010


I find myself frustrated a lot lately.  The paperwork and phone calls about Abby-related funding have not made my to-do list shorter.  The daily tasks continue.  The other day, I had an emotional moment in front of a shelf of Depends in the drug store.  I can't find diapers to fit my girl.  She's too big for the kids' sizes and too small for adults.  I know someone, somewhere makes her size.  But why can't they just have teenage-sized diapers at the store down the street?  Nothing is simple.  Besides, the permanence of this disorder overwhelms me at times like this.  I start to wonder how I will be Abby's case manager for the next 60 years.  Sometimes, I just want to be her mom.

Thanks to the Ontario Rett Syndrome Association, we recently attended a conference in Kingston.  These conferences are held every two years and they bring together families from across the province.  This year, there were also families from Nova Scotia, Newfoundland, and Quebec.  Besides all the benefits of getting together for support, there is always a line-up of guest speakers on Rett-related issues.  I came with my list of questions for families with older girls.  I got some input and ideas about proper seating at school and arm bracing to calm the nervous system.  I attended a workshop on estate planning and another one on the changes in the support system for adults with disabilities.  There is always more to learn and I'm thankful for the people who are there with the expertise, especially the other parents and caregivers.  Your donations to the Ontario Rett Syndrome Association support these conferences.

There has been a lot of progress in Rett Syndrome research in the last few years.  We were grateful, once again, to have Dr. James Eubanks as one of the conference speakers.  He is able to summarize very complicated studies from around the world and make the information accessible to non-scientists, so the parents can follow what's happening.  He is currently at a European conference with several other scientists.  When you look at the program, you will be amazed at how many people are working to find answers for our girls.  Scientists have been able to reverse Rett symptoms in the mouse model, showing that the brain abnormalities in our girls are reversible.  Now the challenge is to find a safe way to treat humans with similar effects.  Recently, O.R.S.A. announced this year's research grant recipient of $35,000.  Your donations to the Ontario Rett Syndrome Association support this research.

It's hard to believe the Run4Rett is only a week away!  To find all the links to register or donate, scroll down two posts.  Thank you to everyone who has shown support for this event in any way.  It is not only our major fundraiser for O.R.S.A.  It is a great chance to connect with other families and to visually see the support from so many people in our lives.  Abby is not alone in this.  She knows it.  The shirts arrived this week and they look great!  (Pick yours up on race day, inside the building, near the Silent Auction.)  I put the huge box of shirts in Abby's room and told her she was in charge of them.  She got a huge grin on her face.  She is looking forward to the day as much as the rest of us.

We have a lot to be thankful for.  Thank you for walking with us in so many ways.

Friday, October 1, 2010

The Big Reveal

The T-shirts have been ordered!  Heartfelt thanks to Trish, Judy's physio friend, who agreed to have her clinic sponsor our team!  Trish has been traveling to the event each year from Vancouver.  Now, that's dedication!  

Special thanks to Dave from Perth Promotional Products for all the extra work on the design and for cutting us a very fine deal on the shirts.  I think he's losing money on us, but he said it was a very worthwhile cause!  

Thanks Trish and Dave!