Four years….

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 .

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Elle’s First Holy Communion

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.

Thank you!

When I decided that January 27th, 2016 was going to be my last game officiating on the Ontario Hockey Association, it was a pretty easy decision to go back to Strathroy for my last game.  I have so many memories in the West Middlesex Memorial Arena growing up as both a hockey player, a coach and a referee that it was only fitting.  I played my minor hockey there, my only Jr. B hockey game there sitting on the bench for the Alymer Aces’ as a backup goalie and I got to referee my first OHA game there one snowy night in 2004.  I didn’t tell many people that I had made the decision to retire from the OHA because I personally did not think that it was a big deal.

However, thanks to so many people, you made it feel like it was a big deal.  I need to start by thanking my wife, Lory, for all that she did to raise awareness of the night but also for the support over the years as an official.  I can’t count the number of nights that I walked in the door from work, grabbed my hockey bag and a warm meal that she had made, and was off to some rink in Southern Ontario.  Without her support I would not have been able to skate as long as I did.

The Strathroy Rockets, truly made the night special for me and I truly appreciate what they did for me.  With the help of Mike Brooks, Gary Dodds and so many others, my officiating crew felt like true professionals from the moment we walked into the rink.  My family, friends and fellow officials were taken care of and my girls were treated like royalty.

Thank you to the Ontario Hockey Association for the years of service award, to the Rockets organization for the framed jersey and the $500 donation to Ref4Rett, and the Rockets players for their $150 donation from their team fines.

A very special thanks the Brantford officials, who are like family to me, for the framed picture, the $500 donation to Ref4Rett and for making the trip to Strathroy to watch the game and celebrating my retirement with me.

While there were some mixed emotions, in the end, I have a significant feeling of accomplishment and pride!  I enjoyed the moment and look forward to the next chapter of my life where I won’t be making a difference on the ice, but hope to be making a significant difference in the life’s of so many people impacted by Rett syndrome.

Honoring a Referee, Great Husband and Amazing Father as He Prepares to Hang up His Skates.

Kevin’s passion for hockey is long-standing and dates back to his childhood when he began playing hockey at the age of 5.  He was a goalie and played in the Strathroy Minor Hockey Association until he was signed by the North Middlesex Stars (OHA Jr D) as a 16 year old and completed his OHA career with the Belmont Bombers (OHA Jr D).

At the age of 15, he decided to try his hand at Officiating  and joined the Ontario Minor Hockey Association in Strathroy, where he continued to Officiate until 2006.   The more games he Officiated the more he loved the role and he continued to push himself to achieve bigger and better opportunities.  While attending the University of Windsor he expanded his Officiating career to additional leagues including the Minor Hockey Alliance of Ontario, the Ontario Women’s Hockey Association and the Ontario University Athletics.  Upon completing University, he returned to Strathroy and was hired by the Ontario Hockey Association as a linesman at the start of the 2002-2003 season in the Sarnia area.  On December 19, 2004, Kevin refereed his first Jr B game in Strathroy when a snow storm left the scheduled Referee unable to make it to the game, and in 2006 he moved to the Brantford area where he continued to referee.

In 2005, just newly married, he was offered a position to officiate in the East Coast Hockey League, which he turned down in order to pursue his Masters of Business Administration and to begin a family.

Kevin has continued to excel as an official and has often been selected to officiate various OHMA championship Series and also a couple of Ontario Hockey Federation Championships.  He is currently one of over 200 Level 5 (of 6 levels) Officials with Hockey Canada and has officiated in multiple Cherrey Cup Finals (OHA Midwestern Jr B Championship) and regularly officiates in the Schmalz Cup (OHA Jr C Championship).

On Friday June 6, 2014, Kevin was awarded the Jack Clancy Award.  This award was created in 1980, in the memory of OHA Referee, Supervisor and Director, Jack Clancy, and is awarded annually to the OHA official who demonstrates a dedicated and responsible attitude towards his duties and the Association, during a playing season.

In October 2012, Kevin’s oldest daughter, Elle, was diagnosed with Rett Syndrome, a rare neuro-developmental disorder.    In order to help him manage the feeling associated with such a devastating diagnosis, as well as away to try to “do something”, Kevin used his passion for hockey, specifically for Officiating and his love for Elle and created; Ref4Rett.   Ref4Rett initially began as a commitment from Kevin to donate $20.00 from each game he Officiates to the Ontario Rett Syndrome Association, but it quickly became something so much bigger and is now a full fledged fundraising initiative in support of the Ontario Rett Syndrome Association (ORSA), in hopes of raising awareness and funds to find a cure for his daughter Elle and other individuals living with Rett Syndrome.

Through Kevin’s dedication along with the outstanding support of the Midwestern Junior C Leagues, the fans and so many caring people with whom he has had the fortune of connecting with, to date, Ref4Rett has raised over $160,000, all of which has been dedicated to research for Rett Syndrome.

On reflecting back on his career, Kevin would say that he is very proud of his accomplishments on the ice.  In leaving the arena each night, his goal was that neither the players nor the spectators remembered who the referee was.  It was never his ‘show’ and he never wanted the attention on the ice; his job was to call a fair game.  Over the years, Kevin officiated a lot of hockey.  He was able to develop friendships with many other officials that went well beyond the game, and was also able to earn the respect of most players, coaches, management and spectators along the way.

It is for this reason, that as Kevin prepares to hang up his Officiating skates in order to spend more time focused on his family, Ref4Rett and as the President-Elect of ORSA, that we feel that it is so important to honour him and support him as he skates his last game on Saturday, February 27th, 2016 in Strathroy when the Strathroy Rockets take on the Chatham Maroons in their last regular season game.

Ref4Rett 2016 an Amazing Success!!!

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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Three Years Later…..

Elle - 2015

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!

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/.

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