We would like to send a big thank you to the staff and students at Saint Michael Catholic High School in Niagara Falls who donated a part of the proceeds from their “Staff/Student Pastoral Out of Uniform Day” to Ref4Rett.

Special mention goes out to Mrs. Janet Hart (Lory’s sister) who has been a champion for Ref4Rett in her community and shared our story with her school.
The love and support that we have experienced from many different communities continue to touch our hearts.

Thank you!!

www.saintmichaelmustangs.com

 

It is so hard to believe that it has been a year since I first heard those words: “Elle has tested positive for Rett Syndrome”. I remember the moment clearly, the room seemed to go silent, the doctor was talking but I could no longer hear his words, the tears ran down my face as I knew that this moment would change my life forever…..

The last year has been a bit of a whirl wind for me. Returning back to work after a 14 month maternity leave, trying to juggle the continued multiple appointments for Elle, managing the on-going debilitating seizures that plague and leave her without the ability to walk for hours and sometimes days following, and trying our hardest to live as “normal” a life as possible. Watching our girls grow is the single most fulfilling and rewarding part of my life, however seeing Paige catch up to Elle in her development reminds me of the struggles Elle will always face.  Rett Syndrome has become a part of my every waking minute and as much as I want to forget that it exists, it has a habit of reminding me that, at least for now, it will never go away.

The grief and loss that I felt upon hearing the diagnosis has changed over the past year. The “why Elle” has changed to “don’t” – Don’t let her have more seizures. Don’t let her lose her ability to walk.  Don’t let her lose her ability to talk.  Don’t let her lose her ability to eat.  Don’t let her develop scoliosis. Don’t let her die suddenly in her sleep as do so many girls with Rett. Don’t let anything happen to Kevin or I because we have to be able to take care of her. Don’t let her die young because I can’t bear to lose her, but don’t let her outlive me, because who will take care of her when I am gone?

It is because of these “don’ts” that both my husband and I are determined to continue to both raise awareness and funds to support on-going research.  And it is for that reason that I reach out to you today on the anniversary of our diagnosis.   Ref4Rett 2012/13 was able to raise over $48,000 in support of the Ontario Rett Syndrome Association (O.R.S.A), all of which was dedicated to research, specifically towards the development of a National Rett Syndrome Registry. The establishment of the registry is important to families across Canada because future drug trials can only be implemented in Canada through an approved registry. Exciting research is happening daily and scientists at the Toronto Western Research Institute at the University Health Network have revealed restored function in the Rett syndrome mouse model across a broad range of symptoms. The study was led by Dr. James H. Eubanks, PhD and recently published in Human Molecular Genetics (http://www.ncbi.nlm.nih.gov/pubmed/24009314). These remarkable findings provide further evidence that a treatment or cure for Rett syndrome is within reach. 

Join us as we continue on our journey towards making Rett Syndrome a thing of the past!

 

As we approach the one year anniversary of Elle’s diagnose and in that October is Rett Awareness month, we felt that it is the perfect time to launch the 2013-14 fundraising season, which will feature our signature event on February 1, 2014.   The Paris Mounties will be supporting the 2^nd Annual Ref4Rett Event and the Ontario Rett Syndrome Association (O.R.S.A.) at their last regular season home game against the Burford Bulldogs. Game time is 7:30 at the Brant Sports Complex in Paris, ON. This event will consist of a raffle and a silent auction, with a goal of raising $30,000.00.  All funds raised through donations, sponsors and the silent auction will be dedicated to research, specifically towards the continued development of a National Registry for Rett Syndrome. The establishment of the registry is important to families across Canada because future drug trials can only be implemented in Canada if there is an approved registry.

In order for this event to be successful and to help us realize our goal, we are looking for event sponsorships, silent auction items or donations of any amount.   We can be contacted at ref4rett@gmail.com for more information.  You can also follow this link to donate now, http://www.rett.ca/index.php/shop/ref4rett/. 

Thank you kindly in advance for your support in this endeavour.

This weekend, Lory, the girls and I are heading to Richmond Hill to participate in the 9^th Annual Run4Rett.  We are looking forward to having a fun family day, getting some exercise (1km Walk/Run), meeting other families affected by Rett Syndrome, and raising awareness for the Ontario Rett Syndrome Association.   In preparation for the run, we designed a custom t-shirt that we are going to be wearing in honour of our angel Elle, and to represent Ref4Rett. “Keep Calm and Cure Rett” is intended to raise awareness for Rett Syndrome, but also to let people know that we believe that finding a cure for Rett Syndrome is a possibility and that we just need to have faith, hope and keep our composure. If anyone is interested in a t-shirt, please contact us for further details.  

As a matter of interest, “Keep Calm and Cure Rett” is a deviation from the original “Keep Calm and Carry On” which was a motivational poster produced by the British government in 1939 several months before the beginning of the Second World War, intended to raise the morale of the British public in the aftermath of widely predicted mass air attacks on major cities.

Stay tuned for event pictures which we will post following the event.   Thank you to everyone one for your continued support.

 

It’s so hard to believe that our baby girl is turning 6 today! Looking back, we would never have imagined the journey that Elle would have taken us on and how in a matter of 10 months our lives have changed so much. We feel blessed that we were chosen to be Elle’s parents. Despite the challenges that she may face daily, Elle brings a light into our world and to the lives of everyone she touches.

 

Friedrich Nietzche once said “That which does not kill us makes us stronger.”

Overcoming all obstacles and becoming stronger is definitely something that Lory and I want to instill in our children.  We feel that this is particular important for Elle given all the hurdles that she has had and will have in her future.  When Elle was diagnosed with Rett Syndrome, George Coventry (one of Kevin’s employees) wanted to do something on his own to help us raise awareness and funds for Ref4Rett.  He decided that he would ride his bicycle to work every day, and while it was only 3 miles each way, he wanted to complete an incredible total distance of 500 miles – which he began on JANUARY 2, 2013!!  The 500 miles took over 5 months to complete and he rode his bike EVERYDAY!!   He rode on nice days, he rode in the rain and he rode in SNOW STORMS!!   He rode in so much snow that on some days he literally had to get off his bike and walk it to work because the snow was so deep. He could have easily stopped or taken a day off, but he didn’t.  He asked for donations from employees at Golden Windows and as a result, he raised $565 for Ref4Rett.

We would like to thank George for raising funds and helping to raise awareness for Ref4Rett, and also for enduring some ridiculous weather conditions to accomplish his goal!

Have a look at the pictures to witness his journey!  (We’re also hoping to post a video on our Facebook site).

“Strength does not come from physical capacity. It comes from an indomitable will.”  ~Gandhi