9th Anniversary of Elle’s Diagnosis

Today is the 9th anniversary of Elle’s diagnosis and once again a time for us to reflect on the last year and to try to share with you our experience in a few paragraphs.  We feel it important to share our experience and journey navigating not just life, but life with Rett Syndrome, as we continue to feel that it is a part of our mission to be a voice for Rett Syndrome awareness.

It’s interesting because as we sat down to write this post, we realized that this past year has just been an extension of the previous year, and although there is some hope with the roll out of vaccines, there is still so much uncertainty and so many challenges that people are facing. 

As parents of a special needs child, we find that we often sit in silence with our worry.  Silence because nobody wants to hear about our issues.  Silence as most people don’t really understand what it’s like to parent a child who’s not the same as other children.  Silence because sometimes when the veneer cracks and you feel safe enough to share some worries, the response is “well it could be worse “or “at least you/she got……”  All well intentioned, but the reality of it is some days are really bad, and some days it’s not so easy to be silent and on those days the silence can feel like it crushes every ounce of our being. 

Let’s share one example of a silent worry we’ve been keeping.  As children get older typically, they develop more independence and freedom.  Hanging with friends, some time on their own at home, maybe even getting themselves lunch or a snack if necessary, and even part-time jobs.  For us, this is not our experience.  There is no increased independence, without planning; there are no “breaks” or downtime for us as parents.  And in fact, as she grows and becomes physically bigger, the physical toll on us is increased.  Her wants and needs are bigger, and it’s no longer possible to just pick her up and move her. 

As we look towards Elle’s transition to high school for next year, the worry for us as parents is indescribable.  Not because there won’t be staff who can care for her, but because they don’t know Elle the way that her current educational team do.  She will move from a school of hundreds of kids to a school with thousands of kids.  And unlike other children who can express worry and concern, she is not able to.  So as parents, it is our job to try to anticipate the challenges she may face, be prepared and ready to react. The emotional toll of this on-going heightened anticipation ever present.

We want to be really clear; we completely recognize that everyone has their own journey.  We know that this pandemic has caused an increase in our silence, but we also recognize that everyone has their own struggles and that everyone has been impacted in different ways.  So, our post today is about breaking the silence, and to be a voice for and stand together with other parents on a similar journey.  For the record, we are not complaining nor are we looking for pity, we just think it is important to raise an understanding for what is our journey.

As you know, over the last 10 years we have received so much support from Todd Wood and the Paris Mounties (OHA Jr.C), who have helped to make Ref4Rett such a success.   Unfortunately, due to Covid-19 and to ensure the safety of our community, we have had to once again make the very difficult decision to cancel what would have been the 10th Annual Ref4Rett event.  But rest assured that we remain true in our passion to raise awareness and funds for Rett Syndrome research and hope to be back with an event in 2023!

If you are interested to learn more about our journey or to make a donation you can visit our website www.ref4rett.com. To learn more about Rett syndrome and O.R.S.A., you can visit www.rett.ca .

October is Rett Syndrome Awareness Month

Once upon a time we were two pretty private individuals, only sharing the intimate details of our lives with those closest to us. However once Elle was diagnosed with Rett syndrome we realized that privacy wasn’t going to help us in our quest to raise awareness and the hope of one day finding a cure. It is for that reason that we agreed to be a part of this community magazine and share our story. Today on October 1st, the first day of Rett Syndrome Awareness month we share this story with all of you.

Thank you to Kari Raymer Bishop for helping us share our story and raise awareness.

#rettsyndrome#lightituppurple#ORSAstrong

9th Annual Ref4Rett

Today was to have been the 9th Annual Ref4Rett Event and unfortunately, due to Covid-19 and to ensure the safety of our community, we had to make the very difficult decision in the fall to cancel the 9th Annual Ref4Rett event.  We do however want to take time to reflect on past 8 events.

Ref4Rett was created after Elle was diagnosed with Rett Syndrome on October 26th, 2012 with the purpose of raising awareness and funds to support Rett syndrome research.  Our first event was planned in just under 3 months and we were overcome with the overwhelming support that we received – it honestly was like nothing that we could have imagined.  But it also helped to confirm our conviction to continue this journey.  

Over the past 8 years we have had different celebrity appearances, including Maple Leaf Alumni and Walter Gretzky.  We have watched the Alumni play, the Timbits play and last year even hosted a Skate-a-ton.  We have handed out towels, water bottles and bags.  We have had raffles, shoot a puck to win a car and of course the signature silent auction.  However, none of these things would have been possible without the tremendous support of Todd Wood and the Paris Mounties (OHA Jr.C).   Our success also would not have been possible without the support of all of the Alumni players who helped to raise funds, the school community and all of their fundraising and awareness, all of our donors, our volunteers and to everyone from far and wide who have attended our events and supported our family.  These nights are truly magical and so memorable for us.

Over the last 8 years, Ref4Rett has been able to raise awareness about Rett syndrome and over $250,000 all which has been donated to the Ontario Rett Syndrome Association’s Hope Fund, which funds Rett syndrome research in Canada.  Although this year’s event has been canceled, rest assured that we remain true in our passion to raise awareness and funds for Rett Syndrome and hope to be back with an event in 2022!

If you are interested to learn more about our journey or to make a donation you can visit our website www.ref4rett.com.  To learn more about Rett syndrome and O.R.S.A., you can visit www.rett.ca .

8 Years Since Elle’s Diagnosis

Today is the 8th anniversary of Elle’s diagnosis and once again a time for us to reflect on the last year and to try to share with you our experience in a few paragraphs.

We would like to begin by acknowledging that this has not been an easy year for many people, and as such, this is a hard post for us to write as we know that many people are facing so many challenges in the face of Covid-19.  We do however feel that it important to share our experience and journey navigating not just life, but  life with Rett Syndrome, as we continue to feel that it is a part of our mission to be a voice for Rett Syndrome awareness.

The last 18 months have been unlike any other for our family. From a job loss, to being in the throes of being the sandwich generation, to the rollercoaster of Elle’s surgery and recovery, and of course the impact of a global pandemic.   But we can laugh sometimes, as when we sit back and reflect over the year, as it is like Rett Syndrome has prepared us for 2020 – unpredictable and ever changing!

For sure the pandemic has highlighted for us the isolation felt by many parents of children with special needs. How things are just different for us.  From the challenges of homeschooling, to the lack of therapeutic and support services.  From a personal and social perspective, having a special needs child sometimes makes certain family activities inaccessible and an early bedtime precludes us, at times, from an invite to family evening activities.  But we persevere and work hard to focus on what we do have.  We use these moments to teach our girls about life’s inequities and how to overcome them.  We try to show them to try find the silver lining in what at times seems like the darkest of times.  We have learned to lean on each other, use the supports of our loved ones and service providers virtually and honestly use the strength that we get from Elle’s never-ending perseverance and determination.

As you know, over the last 8 years we have received so much support from Todd Wood and the Paris Mounties (OHA Jr.C), who have helped to make Ref4Rett such a success.  Over the last 8 years, Ref4Rett has been able to raise over $250,000 all which has been donated to the Ontario Rett Syndrome Association’s Hope Fund, which funds Rett syndrome research in Canada.  Unfortunately, due to Covid-19 and to ensure the safety of our community, we have had to make the very difficult decision to cancel the 9th Annual Ref4Rett event.  But rest assured that we remain true in our passion to raise awareness and funds for Rett Syndrome and hope to be back with an event in 2022!

To learn more about Rett syndrome and O.R.S.A., you can visit www.rett.ca.

Elle’s School Visit

Last Thursday Elle had the opportunity to go into school to visit her classmates and share with them her story about her surgery and recovery.

We were overwhelmed with the outpouring of love and well-wishes from the students and staff alike during our visit.

While we were there we were also surprised with the presentation of a huge basket for the Ref4Rett auction and a check donation for ORSA from the sale of purple popcorn in the month of October.

We couldn’t ask for a better school community –  Elle and our family are truly blessed!

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8th Annual Ref4Rett Event

Last night the 8th Annual Ref4Rett event was held at the Brant Sports Complex and it proved to be another amazing night – with over 480 people in attendance at the Mounties game and over 100 people who participated in our first ever Skate-a-ton.

A special thank you to Todd Wood and the Paris Mounties for allowing us to be a part of their last regular season game!

Thank you to all of those who participated in the Skate-a-ton.  The kids enjoyed being able to skate and chat with the Mounties – there were even a few races on the ice.  This was Elle’s first trip to the arena since her surgery, and she couldn’t get there fast enough.  She loved being able to skate around with her friends – you will notice a smile in every photo!

Thank you to all of our volunteers, without whom, this night wouldn’t have been possible. Thank you to our MC, Andy Thibodeau. Thank you to Cindy Hefferan, from Now & Always, who provided the linens for the hall. Thank to Tanya Taylor from Censational Photo, for capturing the fun.  Thank you to everyone who donated an item to the silent auction, all of those who sponsored someone skating in the Skate-a-ton and to all of our sponsors. The event is truly a culmination of everyone coming together for one cause.

We are so proud to report that this year’s event has raised over $16,000!!!!  All of these funds will be directed towards the Ontario Rett Syndrome Association’s Hope Fund – which is dedicated to Canadian Rett syndrome research.  In the summer of 2020 there will be the first ever Canadian clinical trial for Rett syndrome.  This year we will be requesting that the funds raised at this year’s event be directed to assist families wishing to participate in the trial, in an effort to offset some of the cost associated with a clinical trial.  It is our hope to create accessibility and equity for all those wishing to participate.

Thank you to everyone who came out to support us and celebrate what is always magical night for our family!