10 Years of Rett Syndrome

10 Years

120 Months

3650 Days

That is how long Rett Syndrome has been an official part of our family.

It is so hard to believe that Elle was diagnosed 10 years ago.  It’s always funny how something can feel like just yesterday, but yet be so long ago at the same time!

When we reflect over the last 10 years, what we have come to realize is that although Rett Syndrome has definitely changed our expected journey, it did not cancel it.  Rett Syndrome provided us with the opportunity to experience the journey differently.  Has it been easy – hell no!  But have we made it – hell yes!  With love, faith, and perseverance we have taken each turn and curve ball thrown at us and made the best of the circumstance.  Rett Syndrome hasn’t stopped us from having fun as a family and truly living life the fullest.  In the last 10 years we have continued to have family vacations.  There have been many hockey games watched.  Many shopping trips had.  Lots of time with family and friends and all the other things in-between.   It could be very easy to start to focus on what Rett Syndrome has taken from us, but today as we reflect on the last 10 years, we are going to focus on all the things that we have continued to do despite Rett Syndrome.  We are going to focus on the love that Elle has brought not only to our family, but to those who have had the privilege to get to know her.  Elle posses the very special ability to pick up on non-verbal cues and will very often know when someone needs to receive one of her friendly greetings and warm smile to help brighten their day.  She exemplifies strength and determination, and above all has the most faith of anyone we know.

Last year has been one of change for Elle.  She graduated from Sacred Heart, a school that was like a family community to her.  Where everyone knew her, where she loved to interact with friends and staff, and where she grew from a little girl into the young woman she has become.  In September she entered high school.  Lots of new faces and routines, but we have to say that Elle has adjusted beautifully and the transition has been virtually seamless.

We are excited that this year there was an announcement that the ANAVEX2-73 study for the treatment of Rett Syndrome clinical trial would begin in Ontario.  While we don’t know exactly when these trails will start, we are very excited about the possibilities for Elle and the entire Rett Syndrome community.  Our Ref4Rett initiative was developed to raise awareness and funds for Rett Syndrome research and we are so proud of all the support that we have received over the years, which has helped make this a possibility.

Unfortunately, due to Covid-19 and the incredible impact that it has had on both our community and the small businesses on which we depend for support and donations, we have made the difficult decision that we will not be hosting our annual event with the Paris Mounties.  We do however 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 .

So today, as we recognize the 10 years that Rett Syndrome has been a part of our lives, we would ask you to take a minute to send a prayer, positive wishes and/or intentions to all those who live with Rett Syndrome.


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