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!

One Month Since Surgery

back

One month….today we reflect on one month since Elle’s surgery.   We would be lying if we didn’t admit that the last month has been a bit of a blur.  There has been many sleepless nights, lots of follow up appointments, lots of games of UNO and many, many naps.

Elle’s recovery is going as planned.  Her back is healing nicely and Tylenol seems to manage any discomfort that she may have.  Elle’s biggest challenge has been foot pain.  Foot pain which has kept her up many nights and which makes walking difficult.  The doctor’s have called it neuropathic pain, which can happen after surgery and which should resolve itself over time.   Elle also tires easily and asks to lay down every couple of hours.

Elle’s spirit however, has come through unscathed.   She is motivated to get better.  She walks around the house, and  has just started to do some gentle exercises to strengthen her legs and core.  She often asks to get back to school , to go shopping and to go to the rink to watch her sister play hockey.  Her new line is “my back is all better – I go to Ref4Rett”.  We are hopeful that she will make an appearance, even if for a short time.

We want to thank everyone for all the love and support that we have received.  The thoughts, prayers, well wishes, visits and care packages have helped us all get through this tough time.

Looking forward to seeing those of you who are able to make it to Ref4Rett next Saturday.

8th Annual Ref4Rett Event – February 1st, 2020

Event Details:

  • 5:30 – 7:00 pm – Skate-A-Thon
    • There will be some Paris Mounties players who will be on the ice as well!
  • 7:20 pm – Paris Mounties the Ayr Centennials

**Remember that during all of these events we will also have our signature Silent Auction in the Lafarge Room**

Skate-A-Thon Details:

  • Anyone wishing to participate needs to raise at least $20.
  • Anyone, any age can participate, but you need to be wearing skates to go out on the ice (*provisions available for those requiring accessible access to the ice)
  • Everyone  12 years old and younger need to wear a helmet, regardless of skating proficiency.
  • If you cannot skate, you can still raise money and come to the event.

**All forms for the Skate-a-Thon can be found at https://ref4rett.com/event/

PRIZES

  • Those who raise $50 or more will get a Special Ref4Rett Drawstring Bag.
  • The person who raises the most money will receive a $100 Best Buy Gift card (courtesy of Legends Taphouse & Grill).

 

2020 Poster

 

Surgery a Success

When they say that a picture is worth a thousand words they definitely mean it! After 10 hours of surgery, 2 rods and 26 screws later, Elle’s curve went from 72° to 15°. The result better than what was initially projected.  We are so grateful for the skill and dedication of her surgical team.  We have a long recovery road ahead of us, but couldn’t be happier with the initial result.IMG_20191228_071451_01

Preparing for Surgery

So how do you prepare for the fact that your daughter has to undergo a 10-hour surgery? Something that you have absolutely no control over?  10 hours in which you need to trust the surgeon and the other medical professionals who will be in that operating room.  These are the questions that swirl in our head today as tomorrow Elle undergoes spinal fusion surgery.

When we posted back in October about the surgery, and the feelings we had around what was to come, we thought we had a lot more time before we would have to actually face those fears, but instead we got a month.  A month of feeling more terrified than we have ever felt, a month of planning and organizing, a month of wondering about the ‘what-ifs’, a month of trying to learn every single thing we could about the surgery and recovery.

How bent is her back?  Well at last measure, a week ago, it was at 72 degrees.  What does that really mean?  Well the only way for us to explain is to show you.  With Elle’s permission, we have posted an x-ray picture taken in October 2017 and one December 2, 2019 so that you can see the difference.   We also have posted a picture of Elle’s back as it looks now when she stands to provide a real-life example.

We know that Elle is strong and has overcome a lot of adversity in her life.  We know that we will make it through this, we always do.  But all of that doesn’t take away from the very real terror and uncertainty that tomorrow brings to our family.

Now here we are, with just over 24 hours to go.  There is no turning back.  All we can do is continue to pray and have faith that the surgeon and the other medical professionals in that room will take the best possible care of our little girl.   If you have taken the time to read this post, we would ask that you please join us in whatever way you choose, to hope and pray for our little girl.