Author: ref4rett

Hockey Referee with a daughter with Rett Syndrome trying to raise awareness.

UNLESS

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Below is a blog posted by another parent who has a daughter with Rett Syndrome, I could not help but post it here because these are my exact thoughts and feelings, one month after Elle has been diagnosed.  I could not have said it any better.

“Unless – There’s so much hope, potential, and possibility contained in that word. But also risk and uncertainty.  Unless we try, we’ll never know if it can be done. Unless someone’s prepared to stick their neck out, nothing will ever change. Unless we do it, who will?

For as long as I’ve known about Rett, I’ve been waging a personal battle with the whole business of ‘acceptance’.  Initially it was a simple case of struggling to accept that this thing had happened to my daughter, and this was the direction our family life had taken.  Then, as I learned more about the condition and the research, I realized that it wasn’t simply about adjusting my attitude – but that Rett syndrome itself might change. That some extraordinary work is going on in labs around the world, and girls like Amy might one day be unlocked. That proper, serious, clear-headed people believe it’s possible.

Knowing that, how could we tell ourselves that Amy is ‘meant’ to be this way, and that Rett syndrome is inseparable from who she really is? It became clear that it’s entirely possible to love someone the way they are, while also fiercely wanting them to be set free of the thing that holds them back…..Lots of people were kind enough to tell me they agreed, and one friend introduced me to the word ‘acceptists’ to describe those who would try to convince us that accepting our children means accepting that we shouldn’t want to ‘fix’ them. (Like anyone would ever say that to a parent whose child had cancer or similar.)

Unless we say this – unless we imagine what living without Rett syndrome would be like for the children (and adults) who have it – unless we raise the funds to support the scientists who are working on the thing that means more to us than anything else – unless we stay focused and avoid getting side-tracked by trivia – girls like Amy will stay trapped. We don’t have to accept. And we shouldn’t.”

– Catriona Moore, November 26, 2012

Paris Mounties Supporting Event

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On January 26, 2013 the Paris Mounties will be supporting Ref4Rett and the Ontario Rett Syndrome Association (O.R.S.A.) at their last regular season home game against the Dundas Blues.  Game time is 7:30 at the Brant Sports Complex in Paris, ON.

This event will consist of a raffle and a silent auction.  We are currently inquiring for event sponsorship, silent auction opportunities or donations.  The goal of the event is to raise $15,000.  I have personally made the commitment to donate $20 for every game that I officiate for the rest of my career to O.R.S.A.

Event Sponsorships are limited to 10 corporations at a cost of $300.00 each.  With an event sponsorship, you will receive and direct link from our website (www.ref4rett.com) including a logo, advertising on a pre-event posters (minimum of 50), an ad in the game day brochure, announcements on the Public Address system and additional social media exposure on Facebook and Twitter.

Silent Auction sponsors are also available, we will have 3 spots available at a $300 price point and 5 spots available at a $200 price point and the option to supply an item for the silent auction with a minimum value of $50.  With this sponsorship, you will receive a link on the website, mention at the silent auction table and in the game day brochure and additional social media exposure on Facebook and Twitter.  Please check the event tab on the website for silent auction items and a list of our corporate sponsors.

The Rett Effect

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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

What is Rett Syndrome?

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Rett syndrome (RTT) is a neurodevelopmental condition characterized by the loss of spoken language and hand use, coupled with the development of distinctive hand stereotypes. This disorder is seen in infancy and occurs almost exclusively in females. It is usually caused by a mutation of the MECP2 gene on the X chromosome. Rett syndrome is found in all racial and ethnic groups throughout the world. It affects one in every ten thousand live female births. Early developmental milestones appear normal, but between 6-18 months of age, there is a delay or regression in development, particularly affecting speech, hand skills and gait. A hallmark of Rett syndrome is repetitive hand movements that may become almost constant while awake. Other more common medical issues encountered include epileptic seizures, muscle stiffness, osteoporosis and scoliosis. Despite its multiple handicaps, Rett syndrome is not a degenerative disease. Many individuals with Rett syndrome live long into adulthood. There is currently no cure.