3rd Annual Ref4Rett Event

Neither of us are writers at heart, so each year when it comes time to reflect on the past year and create a post to share with all of you about the upcoming Ref4Rett season, we find ourselves stuck on what to say and how to say it. We are not looking for pity or sympathy but feel that it is important to continue to share our journey, our accomplishments and spread awareness.

Today marks the second anniversary of Elle’s diagnosis and the day that Rett syndrome became an everyday part of our vocabulary.  Our first year was about grief and loss, the second year about fear and a lot of “don’ts” and this past year has been about having Rett syndrome hit us square in the face – what it really means, the impact it can have and how each day is truly unpredictable.

This year was a year full of ups and downs.  In April, we celebrated the incredible launch of the Canadian Rett Syndrome Registry, which we are really proud to have been able to fund a large portion of the development of this Registry through all of our fundraising efforts.  We are also so thrilled that the Ontario Rett Syndrome Association (O.R.S.A.) has created the Hope Fund.   This fund exists solely for research.  One hundred percent (100%) of all of these dollars will go to Rett syndrome research to find a cure and/or treatment for Rett syndrome.  The first fifty thousand dollar grant that will be issued this year is solely possible because of the efforts of Ref4Rett and the tremendous support that we have received from everyone.

Despite all of those great celebrations, this year we also learned how truly hard it is to be a parent of a child with a syndrome that many (not even highly qualified doctors) are not really knowledgeable about or truly understand.  Throughout this past summer, we saw a glimpse of what life would be like if Elle suddenly lost the ability to walk and talk, and the terror that was in her eyes when she was going through the loss.  We learned how truly vulnerable we are and the true meaning of being helpless; when you see your daughter disappearing before your eyes and not knowing what do about it.  We also saw the extraordinary commitment of the doctors who we’ve had the honour of meeting in the Rett community who responded so quickly to our cries for help; trusting that we really do know Elle better than anyone else and who truly listened to our worries.

It has been a year, where Elle has transitioned in her appearance from being a little girl to a big girl of 7.  Being a “big girl” has brought along with it higher expectations of what is “proper” or “normal” behaviour in public.  We have started to notice more looks from those around us who do not realize that she has Rett syndrome.  She is no longer just a “cute little girl” who is just being “cute”, but a 7 year old who makes noise at times where it maybe inappropriate; drawing looks of disapproval from those who do not understand.  We as parents in turn feel the pressure of “why can’t you keep your kid quiet”; when all we really want to do is shout out “SHE HAS RETT SYNDROME AND WE ARE JUST VERY GRATEFUL THAT SHE CAN TALK”.

Despite the busyness of life, we continue to be determined to both raise awareness and funds to support on-going research.  It is for that reason that we reach out to you today.  In the last two years, Ref4Rett has raised over $100,000 in support of O.R.S.A., all of which has been dedicated to research.  Moving forward, all of the Ref4Rett funds will continue to be dedicated to research and distributed via the Hope Fund.

As in the past two years, we continue to receive tremendous support from the Paris Mounties (OHA Jr.C).  On January 31, 2015, we will be hosting the 3rd Annual Ref4Rett Event at the Brant Sports Complex in Paris.  This year’s event is set to be bigger and better and will feature two hockey games.

The first game that starts at 5:30 p.m. and will feature an alumni game between the Paris Mounties Alumni and the Toronto Maple Leafs Alumni.   For one lucky fan there will be the opportunity to coach the Leaf Alumni team through an online auction.  The highest bidder will win the opportunity to sit behind the leafs bench for the entire game and be in the dressing room with the team between periods.  Visit www.ref4rett.myevent.com and click the “Be the Leafs Coach” tab to place your bid.

The second game starts at 7:30 p.m. and will be the last regular season game between the Paris Mounties and the Ayr Centennials.

Tickets to the event are $20 each and include admission to both games.  Tickets are available at the following locations: Legends Tap House & Grill, 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 be an autograph session with the Leafs Alumni and a silent auction.  Our goal this year is to raise $50,000.00 for 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.

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 and prayers, they are all so truly appreciated.


2013-14 Ref4Rett Season

As the end of summer quickly approaches, Elle has just finished her first day of school and hockey season has started.  Elle is back in Mrs. D’s class for another year of Kindergarten, which she is really excited about.  We want to thank the Youth Ambassador’s at Scared Heart for their frozen smoothee fundraiser in June.  The proceeds of their fundraiser were donated to the Ontario Rett Syndrome Association (O.R.S.A.) in honour of Elle.

As I start to gear up for another officiating season, we are planning on continuing Ref4Rett for the 2013-2014 season.  We had such a successful 2012/13 fundraising season, and fundraising for Rett Syndrome research continues to remain a cause that is so dear to Lory and I.  This means that I will be donating $20 from every game that I officiate this season in the O.HA. to O.R.S.A..  We are also planning on having the 2nd Annual Ref4Rett Fundraising Event with the Paris Mounties at their last regular season home game on February 1st, 2014 against the Burford Bulldogs.  We are hoping that a combination of donations, sponsorships and items sold at our Silent Auction to exceed the $48,166 that we raised for research last season.

Lory and I are just in the process of preparing our application to O.R.S.A. and I am officiating some exhibition games this week.  So the fundraising season begins!!

Keep up-to-date on what is happening with Ref4Rett by following our blog or on Twitter or liking us on Facebook.  Thank you for all the support that everyone has shown us as we continue our efforts to raise awareness and hope to one day find a cure for Rett Syndrome.

The Rett Effect

October 26, 2012, the day that my life got turned upside down….the day we heard those dreaded words – “she has tested positive for Rett Syndrome”.  My wife, Lory, had taken our 5 year old daughter, Elle, for a routine visit with the Neurologist, to review her medication for the seizures that started to plague her in March, when she called me with the news.  I’ll tell you, nothing in life can prepare you for a moment like that.    The last 3 years of countless visits to various doctors; from pediatricians to developmental pediatricians, neurologists and a metabolic geneticist, all unable to give us an answer….a heart breaking journey of watching my daughter be poked and prodded.  Finally an answer, although the answer that we dreaded.

I have known for a while that Elle was ‘different’ and probably would not grow up to play hockey or have the ability to golf with me on Sunday mornings.  As a father I was hoping to groom her to be the perfect little ‘tomboy’ that would be able to combine intelligence, beauty and athleticism and set the world on fire.  It was for this reason, that it was so important for me to know the root cause of her delays.  Many people have said “that it won’t change who she is” or “how much you love her” and they are right, but what it has done is change my perspective.  As a father to two beautiful little girls, there is nothing in the world that I would not do to protect them, help them, nurture them and allow them to develop into amazing women.  Now we know what we are dealing with, we know the traits of the syndrome, we know what type of specific care to pursue and we know with Rett Syndrome that there is no known cure, but the researchers are making significant progress.

They say that everything in life happens for a reason and I truly believe that more than ever now.  From the way that Lory and I met and end up together, to the decision not to pursue an opportunity to referee a semi-professional hockey league and to complete a MBA and start a family instead, to the struggles conceiving our second child while exploring so many possibilities with Elle, to the timing of welcoming Paige into this world and now October 26, 2012, the day before Lory returns to work after  maternity leave.  A hockey coach once said that great moments are born from great opportunity.  I believe that this is my great opportunity and it is time to make a great moment.  It is my time to ‘Cowboy Up’ and do some thing positive and try to make a difference in the lives of many families and individuals that are affected by Rett Syndrome.  Although, I had never heard of Rett Syndrome until we tested for it, it now occupies my every waking minute and I want to do my part to find a cure.  It is time for ‘Ref4Rett’.

I have been an amateur referee for more that half my life with the OMHA and the OHA and it truly is like a brotherhood.  Officiating has provided me with a lot of great moments; great games and I have met a lot of great people. It is different that being a player who goes from one team to another, different than a coach who has new players every year.  We have all had ‘bad games’ or challenges during our hockey career, but these are nothing like the challenges that Elle will likely experience in every day life.  I am making a commitment to donate $20 for every game that I officiate for the rest of my career to Rett Syndrome and specifically Ontario Rett Syndrome Association.  I am hoping that as officials, as a hockey fan, a parent or even a compassionate person, that you will help me in supporting this cause that is so near and dear to my heart.

There is a quote that I have read and it brings me to tears every time I even think about it.

“I thought I would have to teach my daughter about the world.  It turns out I have to teach the world about my daughter.”-Unknown