Tag: rett syndrome ref4rett

2013-14 Ref4Rett Season

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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.

Special Thanks-Contour Logistics

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Ref4Rett would like to send a special thanks to Contour Logistics for their very generous donation to Ref4Rett in support of the Ontario Rett Syndrome Association.  We also anticipate some serious bidding action on the pair of Platinum tickets (Section 110, Row 3) for an upcoming Toronto Maple Leafs game on Tuesday March 26th, 2013 against the Florida Panthers at the Air Canada Centre that they have also donated to the Silent Auction at the Paris Mounties game on Saturday January 26th, 2013 at the Brant Sports Complex.

 

Thank You

On By ref4rettIn Rett SyndromeLeave a comment

This Ref4Rett journey started just under a month ago, and I have to say that I am so incredibly overwhelmed at the outpouring of support for both myself, my family and for Ref4Rett.

I need to thank the members of ORSA for jumping on board and fully supporting the Ref4Rett initiative…I really wouldn’t have been able to pull this together so quickly without their support.

Thank you to our family, friends and colleagues who have all been so supportive – emotionally, through donations and by helping to spread the word about this most worthy cause.

The most surprising in all of this, are those acts of kindness from perfect strangers, who with so much compassion, are willing to go above and beyond to help me achieve my goal.

With just under two months left until game day, I’m hoping that everyone can continue to help to spread the word and raise awareness.  Remember you can always “like” Ref4Rett on Facebook or follow me on Twitter.

Thanks again!!   Your love, compassion and generosity do not go unnoticed.

UNLESS

On By ref4rettIn Rett SyndromeLeave a comment

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

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