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.

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