Four years ago today Rett syndrome became a permanent member of our family. As we prepared to write this post, the word that kept coming to mind was acceptance. Acceptance of what Rett syndrome means for Elle and our family and a feeling that everything is going to be okay. Not a “lie down and just accept this” type of acceptance, because we are always going to fight against Rett, but an acceptance of living life in such a way that allows us to integrate Rett syndrome.
Another year filled with ups and downs, but through it all, our goal has been to provide Elle with every opportunity to live life to the fullest and to make any necessary accommodation as silently as possible so that things feel as normal as possible to Elle. An acceptance that perhaps our home, our vacations and even our shopping trips will look a little different, but that it is all okay.
An acceptance that Elle will likely not get to do many of those things that other “normal” 9 year old do and that is okay. By nine, most kids have a well established circle of friends, and doing all those things that come with those friendships. For Elle, we know that there are no longer birthday party invitations, no play dates, no sleepovers, and there is no girl talk, but what we also know is that she is a bright light in the lives of all those that she meets. We know that she is surrounded by a village of people who love and support her.
A week ago, someone very special to Elle told us that “Elle is a teacher to those around her”. She teaches determination and perseverance, and always does it with a smile. Despite whatever may be happening, Elle fights to meet whatever goal she has in mind. Elle has taught us to be fighters and never to give up regardless of the obstalce, and it is her strength that drives us on our journey to continue to raise awareness and funds for on-going research.
With the continued support from the Paris Mounties (OHA Jr.C), on January 28, 2017, we will be hosting the 5th Annual Ref4Rett Event at the Brant Sports Complex in Paris. This year’s event is set to be another great event and will feature two hockey games. The first game will be an alumni game between the Paris Mounties Alumni and the Ayr Centennial Alumni. The second game will be the last regular season game between the Paris Mounties and the Ayr Centennials. Tickets to the event are $8 each and include admission to both games. Tickets are available at the following locations: Legends Tap House & Grill 1084 Rest Acres Road, Paris, during the Paris Mounties Home Games at the Brant Sports Complex, by emailing us at firstname.lastname@example.org or at the door the night of the event. Along with the great hockey, there will also be a silent auction and a raffle draw. Our goal this year is to raise $30,000.00 for the Ontario Rett Syndrome Association’s (O.R.S.A.) Hope Fund which is dedicated to Rett syndrome research.
As we plan for our event, we are currently looking for sponsors, silent auction items, or volunteers to work at the event. If you or someone you know is interested in any of these, please contact us. We’d also ask that any Alumni interested in playing that night, contact us for further information.
If you are interested to learn more about our journey or to make a donation you can visit our website www.ref4rett.com and you can also like us on Facebook or follow us on Twitter. To learn more about Rett syndrome and O.R.S.A. you can visit www.rett.ca .