Ref4Rett 2016 an Amazing Success!!!

On February 1, 2016February 1, 2016 By ref4rettIn UncategorizedLeave a comment

Ref4Rett 2016 was another incredibly successful night, with a record breaking 774 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 community.

The 2015-2016 Ref4Rett season has raised over $25,000 all in support of Rett syndrome research and we couldn’t have done it without of the support of all of the amazing people in this community.

Thank you to Todd Wood and all of his support. The truth is that without his support we wouldn’t have the platform to even host such an event. To our sponsors: Legends Taphouse and Grill, Brantford Nissan, Canadian Home Inspection Services – Stewart MacNamara, Canadian Tire Paris, 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 Kara Wilson from Wilson Sport Photography for capturing all of the incredible moments of the night. 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. 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. Thank you to Molly Gibbons for her amazing performance of the national anthem. 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 sister, Isabela Campbell, and her parents Scott and Holanda, for making the long drive to Paris to share the evening with us.

Since October 26, 2012 when Elle was diagnosed, we have had to learn 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.

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Rett Syndrome Awareness in Jamaica

On December 11, 2015 By ref4rettIn UncategorizedLeave a comment

Thank you to Elle’s EA, Miss Doucette, for helping to raise awareness for Rett Syndrome all the way in Jamaica.

Elle misses you very much!

Three Years Later…..

On October 26, 2015October 25, 2015 By ref4rettIn UncategorizedLeave a comment

Three years….

Some days it is hard to believe that it has only been three years since we heard those dreaded words… “Elle has tested positive for Rett syndrome” . ..yet at times, it feels like an eternity. An eternity of uncertainty, second guessing and hoping. Days when we feel like we understand Rett syndrome and how it impacts Elle, and other days where we feel like we are at it’s mercy having no clue about what we are doing, what is going on, who to call for help and if we are doing enough for her. Feeling lost in the world of therapists, diagnostic testing and medical appointments, and hoping that we haven’t missed something. Some days, despite the amazing people that we have around us, the loneliness of parenting such a special child is overwhelming.

This has been another year of ups and downs. A year of letting down our guard to just enjoy life day to day, and then being terrified when the seizures are out of control and when her ability to walk was once again compromised during the summer. Another year of being grateful for everything that we have, yet a times hating that our lives have been impacted by Rett syndrome. Walking the line of self pity, but then feeling guilty for even letting our minds go there. Raising a daughter with Rett syndrome is both a blessing and a challenge. A challenge for the obvious reasons, and a blessing because we never knew the true depths of victory and joy until we stood witness to Elle’s persistence in overcoming those challenges.

Raising a special needs child has changed our lives. We have been challenged and pushed beyond our limits in raising Elle, but we have also grown tremendously, and developed soft hearts and empathy for others in a way that we never would have without her. Raising Elle has shattered all of our preconceived expectations of the “should bes” – those things that we once idolized and built our lives around – and put something else at the core of our lives: love, understanding and hope.

Knowing the true potential locked within Elle and all of the other individuals living with Rett syndrome, is what continues to give us the strength and determination to continue on our journey to raise awareness and funds for on-going research.

There continues to be so much hope in the world of Rett syndrome as there are numerous research projects and clinical trials happening at independent labs and major universities thought out the world, including in Canada, and as close to home as Toronto. All of this research is aimed at improving the day to day lives of individuals with Rett syndrome, and with ultimate hope of one day finding a cure.

As in the past three years, we continue to receive tremendous support from the Paris Mounties (OHA Jr.C). On January 30, 2016, we will be hosting the 4th 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, or by emailing us at ref4rett@gmail.com. Along with the great hockey, there will also be a silent auction. 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 .

Thank you for the continued support, well wishes, prayers and hope, they are all so truly appreciated.

October is Rett Awareness Month!

On October 1, 2015September 30, 2015 By ref4rettIn UncategorizedLeave a comment

October is Rett Awareness month and we would like to start the month by sharing with a story written by Gina Mueller from Portland, Oregon about her family’s journey with Rett syndrome. Like us, they have two beautiful daughters, one with Rett syndrome. Even though their daughter is impacted differently by Rett syndrome than Elle, there are a lot of similarities in the struggles and feelings that we as parents are constantly facing as a result of this devastating syndrome.

Thank you Gina for putting into words, what we as Rett parents also experience, you can read her powerful story, The One Thing I Want you to know about Parenting My Child with Rett Syndrome, by clicking on the link, http://themighty.com/2015/09/the-one-thing-i-want-you-to-know-about-parenting-my-child-with-rett-syndrome/.

Thanks to Sobeys Paris!!!

On July 18, 2015 By ref4rettIn UncategorizedLeave a comment

Grocery shopping has just become so much easier for us.

We can’t thank Sobeys in Paris enough for obtaining a Caroline’s Cart that Elle can sit in while we shop!!!

Elle absolutely loved our shopping trip this morning!! .

Happy Canada Day!!!

On July 1, 2015July 1, 2015 By ref4rettIn UncategorizedLeave a comment

Today is a day where we take some time to reflect on how lucky we are to live in such a great country and how truly amazing the people around us are.

We feel especially lucky to live in such an amazing community surrounded by some very special people. This past weekend, our neighbours, Wes Willard and Mike Wilkinson, organized the second, Grandville Invitational Charity Golf Tournament and BBQ – all in support of Ref4Rett. Despite the torrential rains, many teams showed up to play golf.

The rain also didn’t keep the kids off of the humongous bouncy castle (turned slip n’ slide).

A special thank you to Wes and Terri for keeping everyone out of the rain and opening up their home for the BBQ.

Despite being in our third year of living with Rett Syndrome, we continue to be overwhelmed with the support and generosity of the people who live amongst us.

Our wish for everyone today, is to take a moment to appreciate all the people in your lives and to remember how truly blessed we are to live in a great country.

3rd Annual Ref4Rett Event Raises over $25,000!!!

On February 4, 2015February 4, 2015 By ref4rettIn UncategorizedLeave a comment

Thank you to Susan Gamble and the Brantford Expositor and Paris Star

http://www.parisstaronline.com/2015/02/03/ref4rett-raises-25000

http://www.brantfordexpositor.ca/2015/02/03/ref4rett-raises-25000

and to Mike Peeling and the Brant News

http://www.brantnews.com/news-story/5320158-alumni-game-for-ref4rett-attracts-biggest-crowd-yet/

for continuing to help raise awareness!

3rd Annual Ref4Rett Event another Huge Success!!!

On February 1, 2015 By ref4rettIn UncategorizedLeave a comment

Here we are 24 hours later, reflecting on an amazing night – which we all thoroughly enjoyed. Seeing friends, old and new, supporting us in this cause so very near and dear to our hearts. From the alumni game, to Elle’s puck drop, to the Leafs Alumni autograph session and the good Jr. C hockey…it was truly a great night!

We want to thank everyone who prayed for good weather – finally mother nature was on our side! As a result, three of Elle’s Rett sisters were able to attend the event. Needless to say, Elle was very excited to see them, and they all seemed to enjoy being surrounded by those hockey players.

Thank you to our volunteers, who worked tirelessly to set up the hall and throughout the event to make it run so incredibly smoothly. Thank you to our sponsors and all of those who donated items to the Silent Auction – there was an amazing selection of items!!!

Thank you to Andy Thibodeau, our MC, who helped bring the event to life.

A very special thank you to Todd Wood and the Paris Mounties organization for all of their on-going support and embracing Ref4Rett, our family and Rett Syndrome as a whole in efforts to continue to raise awareness and funds in hopes of one day finding a cure.

Thank you to the Paris Mounties Alumni, who raised over $7300.00!!! The enthusiasm they all showed, was truly an inspiration to all those around them, and we are so grateful. They also gave the Leafs Alumni a run for their money, but in the end were beat by a score of 9-6.

The support that we continue to receive from this community is completely overwhelming and reminds us daily of how blessed we are.

More pictures and further details to be posted in the coming days…..

Thanks again to all!

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Thank you to Staff and Students at Sacred Heart School!!

On January 31, 2015 By ref4rettIn UncategorizedLeave a comment

Every day we seem to be reminded at how blessed we are to live among amazing people! Yesterday at Elle’s school they held a “Student Buy Out” volleyball game between staff and students. Students had the opportunity to pay $2.00 to get out of class to come to watch the game. The proceeds to support Ref4Rett.

We had the opportunity to go to the game and were amazed at the spirit and excitement in the room!! What a great time!!! As parents, it was so heart warming to see Elle sitting among her teachers and peers, with a huge smile and completely engrossed in a great volleyball game.

While at the game, we were presented with a check for $500.00 which will be donated to O.R.S.A. and a beautiful Crayola Package for the Silent Auction.

Truly blessed to have a great community full of loving people!

Thank you so much for the continued support. Go Lions!!