Thanks to our good friend,Courtney Hall, and Tanya Taylor of Censational Photography for helping us to capture these great memories.

The 5th Annual Ref4Rett was again another incredibly successful night, with over 500 people in attendance!!!! Truly amazing.

It is hard to put into words the feeling that we get when we see the Brant Sport Complex full to the brim with so many people who turned out to watch some great hockey and support Elle and Ref4Rett. We work so hard to pull this event together and when we sat in that arena on Saturday night and looked around, it left us feeling breathless and once again so proud to be a part of this special community.

To date, the 2016-2017 Ref4Rett season has raised over $25,000 and we are not done yet with the Knight of Columbus breakfast on February 5th. All of these funds are in support of Rett syndrome research in Canada and we couldn’t have done it without the support of all of the amazing people in this community.

Thank you to Todd Wood and the Paris Mounties for all of their support. The truth is that without Todd’s support we wouldn’t have the platform to even host such an event. To our event sponsors: Golden Windows Limited and Legends Taphouse and Grill and our additional sponsors Brantford Nissan, Canadian Home Inspection Services – Stewart MacNamara, Canadian Tire Paris, Kidtastic Adventures and Masonite. Thank you to Cindy Hefferan from Now & Always Special Event and Wedding Decor for donating all of the linens so that we could make the room look beautiful. Thank you to the Paris Mounties Alumni and the Ayr Centennials Alumni for agreeing to give of their time and raise money to be a part of this event. Thank you to Walter Gretzky for his surprise appearance at our event – bringing a smile to all those who met him. A special thanks to Courtney Hall for capturing many images of the night for us and to Tanya Taylor from Censational Photography for capturing moments from the night that we can’t wait to see (more photos to come). To our all of our volunteers, who without, we definitely couldn’t have made the night happen! Thank you to everyone who donated an item to the silent auction or who made a monetary donation. And last, but definitely not least, to all of the people who attended the event – none of our success could have been possible without your attendance.

A very special thank you Elle’s Rett sisters, Anna, Olivia and Marissa, for sharing this special night with us.

Since Elle’s diagnosis on October 26, 2012, we have learned to live our lives with hope and faith, and the on-going expression of support really does help to fuel our hearts and gives us the strength to continue on this journey.

And the winners are….

1st Prize: Anne Murchie

2nd Prize: Charlie Sayles

We are very pleased to announce that the Knights of Columbus have decided to sponsor Ref4Rett and the Ontario Rett Syndrome Association at their upcoming charity breakfast which is being held on Sunday February 5^th, 2017.  We are looking for 6-8 volunteers to assist us in serving, clearing and cleaning dishes at the event.  If you can assist, please let us know by email (ref4rett@gmail.com) or Facebook, as soon as possible.  These hours could count towards a student’s volunteer hours.

If you are not able to assist but would like to support us and enjoy some good food, breakfast is being served from 9:00 am to 12:00 pm at 12 Catharine Avenue in Brantford.  The cost is $8.00 per adult and $4.00 for children under 10.  ALL YOU CAN EAT! Invite your friends and family. Everyone’s welcome!

ON SALE NOW!!!

Tickets for the Ref4Rett Raffle are now available.

If you are interested in selling tickets or purchasing some, please contact us.

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 ref4rett@gmail.com 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 .

In honour of Rett Syndrome Awareness month we created a short video to show Elle’s development over the last nine years.

Through the good and bad, Elle remains determined and has a true love for life. Enjoy!

Please help us to continue to raise awareness and share this video.

https://www.facebook.com/Ref4Rett/

For those of you who know Elle, you will know how much she loves going to church every Sunday and in particular her true fondness for our priest, Father Michael Bennett.

Today was a particularly exciting Sunday for Elle, as she celebrated her First Holy Communion. It was heart warming to see how truly excited she was to be receiving Jesus into her heart.

A special thank you to all of our family, school friends and fellow parishioners who were able to witness her very special day.