A week ago when I was thinking about October 26th and what that day means to us.  I was thinking that I should probably start to pull something together for our annual post.  However,  I also had a moment where I thought that maybe I wouldn’t post anything, this year.  I had a moment where I thought maybe people are tired of hearing of our story; there hasn’t been anything exceptionally significant over the last year and for all intents and purposes Elle has been pretty stable and we’re just living life.   But then we went to the Rett syndrome conference in Ottawa this past weekend, and I was reminded again of why we started Ref4Rett.

A diagnosis of Rett syndrome is absolutely devastating.  The grief that a parent feels when they hear those words is indescribable.  I remembered that the reason we started Ref4Rett was because we were hopeful for what this initiative might be able to mean.  We wanted to raise awareness and raise funds for research, but really it provided us a journey of hope. 

This weekend we were inspired by the speakers that we listened to, by the families who shared their stories and by the beautiful girls and women who live with Rett syndrome.  We found hope in reconnecting with families.  We found hope in listening to the doctors who support our girls.  And we found hope in listening to the researchers who continue to pursue their knowledge of Rett syndrome and who shared information about clinical trials that are currently in progress and soon to be available in Canada.  And although the clinical trials might not be right for everyone, what I do know is that they will be right for some and then they will give those families continued hope.  Hope for today and hope for the future. 

So today, as we recognize the 11th anniversary of Rett syndrome being a part of our family it is with renewed hope that I write this post and it is with renewed hope that we enter this next year.

We are so grateful to all of those who have continued to support us in our journey.  We remain committed to our mission to raise awareness and funds for Rett Syndrome research.  If you are interested in supporting Rett Syndrome research in Canada, donations can be made to the Ontario Rett Syndrome Association at https://www.rett.ca/donate/ or on our website at https://ref4rett.com .   Show your support and help to raise awareness by wearing purple or lighting it up purple on October 29^th – Rett Syndrome Awareness Day.