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
One thought on “The Rett Effect”
Hi Kevin, My name is Terry Boyd and I understand how you are feeling. Last Friday was our anniversary of hearing the words “Your daughter has Rett syndrome”. That was told to us on November 9th, 1989. A day we will never forget. It is the day our journey as a family changed forever. Our journey has been joyous, difficult and full of hidden surprises. Today we rejoice our beautiful daughter, Kayleigh, who is our third child. She has graduated from school, has been a flower girl,a maid of honour and is a god mother. These are many milestones we never thought she would enjoy. This September we celebrated her 25 birthday with 30 our her friends and family members. Thank you for your dedication towards this great new fundraising event. and directing the funds raised to O.R.S.A. Our family loves hockey. Both myself, our son and my husband played hockey for many years. Once again thank you for your dedication.