Today we write this post as we mark the 13^th anniversary of Rett Syndrome in our lives.  As many of you know, after several years of uncertainty, Elle was diagnosed with Rett Syndrome just after she turned 5 years old, and since that day our lives have never quite been the same.

Parenting a child with Rett Syndrome has been one of the most profound journeys of our lives. It has been a journey filled with love, resilience, and joy—but also with quiet challenges that many never see. The sleepless nights, the endless appointments, the advocacy, the moments of uncertainty, and the worries for the future have all been and continue to be a part of our path.  And while there is beauty in the journey, there is also a loneliness that grows heavier with time. 

When your child is young, offers of help often come more readily. As she has grown, those offers have lessened, and the isolation can feel sharper. The older she becomes, the more invisible the struggles for us, as parents, sometimes feel.  No one sees the constant weight that we carry, or the impact on us individually and as a couple.   Why?  Because Elle’s spirit radiates, and her strength continues to inspire us every single day to put our bravest foot forward, and a constant reminder of what it means to truly persevere and love unconditionally.

For many years, we have shared pieces of her story; to raise awareness, to celebrate milestones, and to show the world the extraordinarily beautiful person that Elle is.  Those posts have been filled with our pride, but also with the vulnerability of letting the world into such a personal part of our lives.  Sharing has been a way of connecting, of easing the loneliness, and of letting her light reach others.

Now that Elle has reached adulthood, we want to honor her privacy and dignity in the same way we would with any adult. Moving forward, our updates will be fewer and more private. Her story is hers to hold, and we will respect that as she steps into this new chapter of life.

We are deeply grateful for the support and love so many of you have shown along the way. And as we look to the future, we carry hope: hope for continued progress, for joy in small and big moments, for strength in the hard days, and for a community that continues to see and value Elle – and others like her – for exactly who she is. 💜

If you are interested in learning 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 .

Not going to lie…this birthday stings a bit. How is our baby girl an adult?!?

Today, we celebrate not just your birthday but all the love, strength, and light you’ve brought into our lives over the past 18 years. From the very first moment we held you, you showed us the true meaning of unconditional love.

In your life, you’ve faced challenges with courage, joy, and a spirit that inspires everyone around you. You’ve taught us patience, gratitude, and how to see beauty in the smallest of moments. Every smile, every laugh, every hug is a gift that we treasure more than anything in this world.

As you turn 18, know that you are deeply loved for exactly who you are. We are endlessly proud of you, and are so blessed to be your parents.

Happy 18th birthday, our precious daughter. The world is brighter because you are in it, and my heart is forever full because you are ours. 💜💜💜💜

A week ago when I was thinking about October 26th and what that day means to us.  I was thinking that I should probably start to pull something together for our annual post.  However,  I also had a moment where I thought that maybe I wouldn’t post anything, this year.  I had a moment where I thought maybe people are tired of hearing of our story; there hasn’t been anything exceptionally significant over the last year and for all intents and purposes Elle has been pretty stable and we’re just living life.   But then we went to the Rett syndrome conference in Ottawa this past weekend, and I was reminded again of why we started Ref4Rett.

A diagnosis of Rett syndrome is absolutely devastating.  The grief that a parent feels when they hear those words is indescribable.  I remembered that the reason we started Ref4Rett was because we were hopeful for what this initiative might be able to mean.  We wanted to raise awareness and raise funds for research, but really it provided us a journey of hope. 

This weekend we were inspired by the speakers that we listened to, by the families who shared their stories and by the beautiful girls and women who live with Rett syndrome.  We found hope in reconnecting with families.  We found hope in listening to the doctors who support our girls.  And we found hope in listening to the researchers who continue to pursue their knowledge of Rett syndrome and who shared information about clinical trials that are currently in progress and soon to be available in Canada.  And although the clinical trials might not be right for everyone, what I do know is that they will be right for some and then they will give those families continued hope.  Hope for today and hope for the future. 

So today, as we recognize the 11th anniversary of Rett syndrome being a part of our family it is with renewed hope that I write this post and it is with renewed hope that we enter this next year.

We are so grateful to all of those who have continued to support us in our journey.  We remain committed to our mission to raise awareness and funds for Rett Syndrome research.  If you are interested in supporting Rett Syndrome research in Canada, donations can be made to the Ontario Rett Syndrome Association at https://www.rett.ca/donate/ or on our website at https://ref4rett.com .   Show your support and help to raise awareness by wearing purple or lighting it up purple on October 29^th – Rett Syndrome Awareness Day.

10 Years

120 Months

3650 Days

That is how long Rett Syndrome has been an official part of our family.

It is so hard to believe that Elle was diagnosed 10 years ago.  It’s always funny how something can feel like just yesterday, but yet be so long ago at the same time!

When we reflect over the last 10 years, what we have come to realize is that although Rett Syndrome has definitely changed our expected journey, it did not cancel it.  Rett Syndrome provided us with the opportunity to experience the journey differently.  Has it been easy – hell no!  But have we made it – hell yes!  With love, faith, and perseverance we have taken each turn and curve ball thrown at us and made the best of the circumstance.  Rett Syndrome hasn’t stopped us from having fun as a family and truly living life the fullest.  In the last 10 years we have continued to have family vacations.  There have been many hockey games watched.  Many shopping trips had.  Lots of time with family and friends and all the other things in-between.   It could be very easy to start to focus on what Rett Syndrome has taken from us, but today as we reflect on the last 10 years, we are going to focus on all the things that we have continued to do despite Rett Syndrome.  We are going to focus on the love that Elle has brought not only to our family, but to those who have had the privilege to get to know her.  Elle posses the very special ability to pick up on non-verbal cues and will very often know when someone needs to receive one of her friendly greetings and warm smile to help brighten their day.  She exemplifies strength and determination, and above all has the most faith of anyone we know.

Last year has been one of change for Elle.  She graduated from Sacred Heart, a school that was like a family community to her.  Where everyone knew her, where she loved to interact with friends and staff, and where she grew from a little girl into the young woman she has become.  In September she entered high school.  Lots of new faces and routines, but we have to say that Elle has adjusted beautifully and the transition has been virtually seamless.

We are excited that this year there was an announcement that the ANAVEX2-73 study for the treatment of Rett Syndrome clinical trial would begin in Ontario.  While we don’t know exactly when these trails will start, we are very excited about the possibilities for Elle and the entire Rett Syndrome community.  Our Ref4Rett initiative was developed to raise awareness and funds for Rett Syndrome research and we are so proud of all the support that we have received over the years, which has helped make this a possibility.

Unfortunately, due to Covid-19 and the incredible impact that it has had on both our community and the small businesses on which we depend for support and donations, we have made the difficult decision that we will not be hosting our annual event with the Paris Mounties.  We do however remain committed to our mission to raise awareness and funds for Rett Syndrome research.  If you are interested in supporting Rett Syndrome research in Canada, donations can be made to the Ontario Rett Syndrome Association at https://www.rett.ca/donate/ or on our website at https://ref4rett.com .

So today, as we recognize the 10 years that Rett Syndrome has been a part of our lives, we would ask you to take a minute to send a prayer, positive wishes and/or intentions to all those who live with Rett Syndrome.

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 .

Today was to have been the 9^th 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 26^th, 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 .