We are proud to finally announce our winners for the December Raffle. Thank you all for donating and spreading the word for Rett Syndrome!
In FIRST PLACE, we have Bri Milli. Congratulations Bri!
Our SECOND PLACE winner is Heather Smith. Thank you so much Heather!
Our THIRD PLACE winner is Barbara Wilson. Thank you Barbara!
December 2021 Gift Giving for Rett BC
It is time for our annual December Raffle for Rett Syndrome! We aim to raise over $600 this year, and we are grateful for each and every ticket purchased. The link is down below, and let your friends and family know! Single tickets are $5. The prizes this year are three Visa gift cards worth $300, $200, and $150, with one winner each.
The deadline for the purchase of tickets is 12:00 am on Thursday, December 23, 2021, and the draw is Monday, December 27, 2021, at 11:00 am. More details are at the link below!
https://rettbc.rafflenexus.com/
A big thank you to everybody who has raised money for Rett Syndrome in the past couple of months, especially those who participated with their schools and businesses.
The Rett Syndrome Society of BC would like to thank Blue Mountain Elementary School in Maple Ridge for raising awareness about Rett Syndrome for the second year in a row!
We would also like to thank Megan Shewchuk from T’hekä Mixed Media for partnering with us during October for the fundraiser, and for all the work, effort, and love she put into making each of the toques. (see our October 18 news post)
Finally, we would like to thank Byrne Creek Community School for raising $200.00 this year in honour of a fellow classmate!
October is Rett Syndrome Awareness Month! As it comes to an end, we want to feature the places that lit up yesterday (October 29th) for Rett Syndrome Awareness. Below is a slideshow of a few places in BC that we captured, as well as the list of places for all of Canada. Let us know if you noticed or visited a place in your neighbourhood that lit up! We are looking for more pictures and images for our website of places that lit up that we could not capture ourselves, and if you have some, please email them to info@rettbc.ca
-The RSSBC Team
We are proud to announce our partner fundraiser with T’hekä Mixed Media! T’hekä Mixed Media is a local business based in Maple Ridge, BC. They specialize in knitwear, stickers, and more! October is Rett Syndrome Awareness Month, and all proceeds will be donated to RSSBC. We hope you consider purchasing a beautiful hat to support the research, care, and lives of those with Rett Syndrome. -The RSSBC Team
From T’hekä Mixed Media’s Instagram @theka_mixed_media
“Hello everyone! My name is Kayla, I have Rett Syndrome. I use an eye-gaze computer. An eye tracker scans my eyes and lets me point to words that are programmed into the computer without using my hands. The computer then speaks all my thoughts! Cool, right? I like people to know that I understand what they say, please don’t ignore me!
My favourite food is junk food. I like to go to movies; my favourite studio is Pixar. I have a dog named Nova. My favourite song is The Circle of Life. My favourite TV show is Loki on Disney+.”
Kayla is an absolutely amazing human and we have teamed up to bring you something special this October. We both went to Elementary school together and recently reconnected when she came into my other job one day. We got to talking and thought this month would be an awesome opportunity to do some fundraising!! 💜💜💜
October is Rett Syndrome awareness month, so for the entire month of October I will be offering these beautiful purple toques (the Rett Syndrome ribbon colour) that Kayla picked out herself, and all proceeds will be going towards the Rett Syndrome Society of British Columbia (RSSBC) @rett_syndrome_bc link for the organization will be in my bio for the entire month so you can check them out yourself! Sizes and quantities will be limited! 💜
Go check out Kayla’s account as well at @kwalk.eats She loves making food and sharing her creations with everyone. YUMMY!
Images courtesy of T’hekä Mixed Media’s Instagram and Etsy
From Josh:
July 16, 2021
Last week we moved on from Niagara Falls and made our way to Emerald Lake, a combination campground & waterpark about an hour west of Toronto & used it as a base to explore the Toronto area.
Many of the famous attractions were closed, but we spent a day just wandering around Downtown Toronto and saw the CN Tower, Rogers Centre, Scotiabank Arena, the old steam train roundhouse, Union Station, and wandered along part of the waterfront. Oliver met Tim Horton & got a Beavertail (he loves those things) and also got a couple of Toronto Raptors jerseys!
We also spent a day at the Toronto Zoo. Unfortunately, it was really hot which is always a challenge for June. We also found that many of the exhibits at the zoo, while technically wheelchair accessible, are unable to be viewed while seated in a wheelchair due to solid (not glass) guard rails. As June is connected to two tubes at pretty much all times now (one into her jejunum with her food going in and one connected to her stomach allowing it to drain) you can imagine that the process of getting her disconnected and in & out of her chair every few minutes gets pretty old…. Oliver got himself a nice water bottle as a souvenir – he LOVES gift shops 
We also spent one whole day and one evening at the waterpark – it was super busy the day we were there, and we had fun out on the inflatable water toys in the lake, and wading in the kid’s pool. The evening we went to the waterpark it was raining and there was hardly anyone around. Oliver and I had the waterslide all to ourselves!
June is still pretty much the same – ongoing GI struggles but enjoying herself most days. One good seizure a few days ago but otherwise stable in that regard. Fingers crossed we get some reprieve from the heat next week.
From Josh:
July 6, 2021
We spent our last couple of days at Sauble Beach enjoying the lake and the beach. We built some couple sandcastles, swam, and generally enjoyed ourselves. We also took June out into the lake in the small inflatable boat we have, which she seemed to quite enjoy as she rolled up and over the large waves!
On Saturday, we packed up and moved across Southern Ontario to Niagara Falls. It is a truly amazing thing to see – pictures just do not do it justice! The sheer volume of water coming down is unbelievable. Stacy has some family in Toronto, and they came down to spend the day with us on Sunday which was really great! We have seen them so many times in Victoria, it was nice to be able to see them in their home province. They were excellent tour guides and hosts!
We’ve spent the last few days exploring around Niagara Falls and Niagara-on-the-lake, a small town north of Niagara Falls on the south shore of Lake Ontario that is surrounded by wine country. It’s beautiful!
Today we enjoyed the Clifton Hill area of Niagara Falls – a very touristy amusement park type area just a short walk from the falls. We rode the sky wheel, and we all got to go on the go-karts – even June, though that didn’t work out super well in the end…. We even enjoyed our first sit-down restaurant meal out as a family for as long as we can remember!
Unfortunately, June’s GI issues are back in force and have continued to give her trouble with a lot of pain and discomfort, and up repeatedly through the night for a number of nights in a row now. Fingers crossed this Candida treatment we are working through will continue being effective and eventually bring her some of the healing and relief that we hope it will.
Tomorrow we will celebrate Oliver’s 11th birthday together! It is supposed to be rainy and thunderstorms tomorrow – fingers crossed for a bit of sunshine thrown in there too!
Photo Credits: Josh McCulloch on Facebook
From Josh:
June 28, 2021
We spent our last day on Manitoulin Island enjoying a walk along the waterfront in the town of Little Current. Unfortunately, the weather was cloudy & drizzly so we didn’t get any more lake time in, but we did find this super awesome automated Pizza machine in a small shipping container – literally looked like it was dropped in a gravel parking lot! Fresh, hand-made raw pizzas are refrigerated inside, you place your order via the touch screen, pay by tapping your credit card, then the robotic machine takes over and 3 minutes later your hot pizza pops out! And they are EXCELLENT. Thin, chewy hand-stretched crust and fresh toppings – mmmmm. Is anyone interested in partnering on bringing a few machines to the Victoria area?
Instead of driving around Georgian Bay, we took the Chi-Cheemaun ferry from Manitoulin across to the Bruce Peninsula. It was extremely foggy, so we missed what was likely a spectacular view, but it saved us about 5 hours of driving around so it was all good. After getting off the ferry, we made our way down to the town of Sauble Beach, ON which is on the shores of Lake Huron. We got caught in the middle of a torrential downpour right as we arrived at our campground – maybe the rain in Grasslands during one of the thunderstorms was as heavy, but definitely nothing we get on the west coast compares to the intensity of the rainfall we’ve had at times on this trip! I was soaked through by the time we were set up.
Sauble Beach is awesome – we’ve pretty much just enjoyed the beach since we’ve been here, and the sun has finally come out for us. It is an 11km long sandy beach – beautiful, fine sand. You can wade out at least a hundred meters and still be standing on the bottom. There are no weeds and minimal smooth rocks in places, but otherwise, it feels like a beautiful tropical beach, except freshwater. The town itself is pretty cool, albeit a resort-ish town that seems geared to tourists. There are plentiful shops and restaurants that all feel pretty unique. We love it here!
June has had some ups and downs, but overall is doing OK. And of course, she LOVES the water, so lake time is a real treat for her – she’s such a water girl!
From Josh:
June 24, 2021
Canada is HUGE. Since our last update, we’ve driven over 2100km from SE Saskatchewan, through Manitoba (which is closed to us) across Northern Ontario, around the top of Lake Superior, and arrived on Manitoulin Island. And we covered that distance in 4 drive days, with just one day off thrown in the middle of it. Covering that distance in that amount of time is a big task for anyone, but for us, it was a serious mission. Between towing a big rig, and the frequent stops we need to make for June, it takes a toll for sure! We’re learning that moving often is a LOT of work.
Most of our drive days were uneventful, but we did find a couple of cool spots to stop and check out – Kakabeka Falls & the Terry Fox Memorial, and a beautiful beach on Lake Superior where June enjoyed playing in the sand. The drive along the shore of Lake between Wawa and Sault Ste. Marie is particularly beautiful and we’d like to come back and spend some more time in this area.
After arriving on Manitoulin Island, we enjoyed a beautiful sunset and threw some rocks in the lake. Today we walked around the campground, a quick swim this morning for Oliver, and a drive to explore the massive wind turbines close by. June is also getting some of her strength back – she has been doing more walking the last couple of weeks and is able to go longer each time. We are very thankful for that and hopeful that it continues. We also passed the 1-month mark on our trip – time is flying, and we are really enjoying this adventure and time together.
Spicy Mango Paradise Roll 🥭🍣
Spicy tuna, spicy sockeye salmon, avocado, mango, mango apple sauce, and of course, spicy sauce.
This roll I found was different, it was spicy and even possibly healthy?! It had a little salad of lettuce and beets, yum!
5/5 ⭐️, would eat again
Follow my Instagram @kwalk.eats
