The Rett Syndrome Society of BC Annual General Meeting is Sunday April 30th at 7:30 pm! For those who are part of our newsletter mailing list, you should have gotten an email invite, if not, please email info@rettbc.ca so that you can participate!
As a society, we would love to hear your opinions, thoughts, feelings, and concerns. As well, we do need at least 5 members to make proxy and to ensure that we are representing and encompassing the experiences of those we serve each year.
Bonus: if you attend the entire meeting, you will automatically be entered into an Amazon gift card draw.
A huge thank you to the Suhl Family for all their time, effort and donations towards the 1st awareness tree for the Port Coquitlam 10th Annual Christmas Tree Festival.
For those that don’t know the festival is a chance to vote on your favourite Christmas tree that have been set up throughout the city of Port Coquitlam. RSSBC’s is set up at the Hyde Creek Recreation Centre in the main lobby.
The festival/voting will being Nov 25th and ends Dec 16th. Winners will be Announced on Dec 16. The trees will remain in place until Jan 3rd silently raising awareness for Rett Syndrome.
We encourage everyone to take a few minutes and come down and check it out! Its more beautiful in person then it is in the photo! Thanks to the design and planning of Sukhi!
Here are the locations for this year’s cross-Canada collaborative light-up! Feel free to take photos of the places lighting up in your hometown. We are so excited to see Canada glow purple this year.
As October is coming to a close, we wanted to present this video made by the Ontario Rett Syndrome Association in collaboration with the other Rett Syndrome societies and associations in Canada, including us. Enjoy!
If you did not know already, October is Rett Syndrome Awareness Month!
This year, we are inviting you to help spread the word about Rett Syndrome. On October 29th, landmarks across Canada will be lit up purple for Rett Syndrome.
R.S.S.B.C. is looking for locations in your community that light up for various causes. If you know of a location that we should contact please let us know at info@rettbc.ca
If you did not know, we have a YouTube channel! Our YouTube will be used to post seminars and educational videos, as well as resources. The link to our channel as well as our latest Zoom video will be down below:
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!
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
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
“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
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.
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!
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!
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.
After leaving Grasslands National Park, we continued our way east on some secondary highways in southern Saskatchewan. We made our way through Gravelbourg, a small francophone town that was featured in a recent season of CBC’s “Still Standing”, a TV series showcasing Canada’s struggling small towns. While much of what we wanted to see was closed due to COVID (the French bakery/cafe was top of our list), we did manage to get a personal tour of the local Cathedral from the same guide that was on the show! It was a great experience, and June actually seemed very interested in all of the art inside. We had planned to be in the Winnipeg area this week, but with Manitoba pretty much closed to non-residents, we needed to find somewhere else to hang out for the week while we waited to see whether Ontario was going to open up.
We wanted to be close to the Saskatchewan/Manitoba border, to give us the possibility of driving right across Manitoba in one day. I seem to have lucked out in finding Moose Mountain Provincial Park in SE Saskatchewan! It is a large park that actually has a community inside of it – apparently the only park in the province like it. There are a number of lakes – one of which has a nice beach and is swimmable – as well as golfing and lots of walking/cycling trails. They even have full service (water, sewer, electric), pull-through sites! We were able to get 6 nights in a huge site with a massive lawn area! We’ve been mostly relaxing here – we had one beach day, but otherwise have been hanging around the campsite and trying to slow down a bit.
June has had a few more rough patches the last few days too – she is having more blood show up in her stomach drainage and has been more upset/irritable at times too. We’re hoping this will pass soon. Today she slept on and off all afternoon & it’s nice to be able to just let her do that when she needs it. With Ontario having just announced they are removing their travel ban, Saturday we are continuing east – it will be a long drive day from here to western Ontario!
Grasslands National Park is Canada’s only national park that represents a prairie grassland ecosystem. It’s located in Southern Saskatchewan and is broken up into two parts that are about 150km apart – the West-East Blocks. We recently spent four nights in the West Block and were really surprised by how much we liked it there. I booked us there as it is one of Canada’s Dark Sky Preserves – areas of the country where there is virtually no light pollution so you can get a clear view of the night sky. But there is much more to Grasslands than that! We enjoyed walks through the native prairie, biking around the campground, learning about and seeing wildlife, exploring the backcountry by truck, and experiencing some insane weather.
There is a herd of wild Bison at Grasslands that were re-established thereafter nearly becoming extinct. They roam freely, grazing on native grasses, and are generally undisturbed by people and cars. In addition, we saw Coyotes, a Badger, Black-Tailed Prairie Dogs (different from the common Gopher), and lots of different birds.
Our time in Grasslands was quite the adventure though, and to be honest we were pretty fatigued by the end of our time there. The day we arrived it was very windy – so windy that the auto-leveling system in our trailer was confusing and wouldn’t level itself. The wind kept picking up our plastic leveling blacks and blowing them across the prairie That night, we experienced the first of two major prairie storms. Torrential rain, high winds, lightning, and thunder – it was the first storm we’d experienced in the rig and we were quite nervous.
We recently got to spend about 18 hours in Dinosaur Provincial Park in SE Alberta and wish we had a week. It was unbelievable there, with hiking and exploring to do for days! I got myself stuck halfway around the campsite loop (the park’s website said we could fit in our site – which we did – but the road to get there was WAY too tight) and had to back out, and then continue backing around the loop road the wrong way, right into our site. It was an adventurous introduction to the park, and I was pretty proud of myself for being able to do it without damaging anything! I’m sure we greatly amused the twenty-somethings that were watching the whole thing unfold. Once we were set up we headed out for some short walks along a 3km scenic loop drive in the park and got to see 2 real dinosaur skeleton fossils exactly where they discovered them.
On our next visit here we’d love to do one of the guided walks with a park interpreter to see even more fossils! We were treated to some dramatic skies and a lightning show near the end of our visit as well. Can’t wait to go back there – a trip highlight so far!
We’ve now been out of our house and on the road for a full two weeks. Can’t believe it – it’s flown by and we are nowhere near feeling like we’re done yet, which I suppose is good! Road life seems to suit us well so far – we are enjoying seeing and doing new things together. June has been doing reasonably well since the last update – she hasn’t had any seizures, and overall seems to be feeling well most days. She is still having intermittent pain in her head and blood showing up in her gastric drainage, which we are still assuming is coming from her sinuses. We have been using a steroid nasal spray along with a humidifier at night to help give her some relief which seems to be working. Other than that, nothing major to report, which is always a good thing for June.
Since our last post, we’ve moved on from Hinton/Jasper (after spending our last day at Talbot Lake in Jasper NP) and spent 5 nights in a really nice campground just outside Edmonton in a town called Devon. We had a lovely grassy spot overlooking the North Saskatchewan River and used it as a base to explore the Edmonton area. Unfortunately, many of the things we wanted to see or do were closed but we got to see the Alberta legislature & day-tripped out to Elk Island NP where we saw beavers and Bison. We also took the opportunity to slow down and enjoyed a few days relaxing on our site. Oliver bought himself a new RC boat and loved being above to drive it just across the street from our site!
Today we arrived in Drumheller AB and after getting set up went for a drive to explore the badlands around the Royal Tyrrell Museum and see the surrounding area. It is stunningly beautiful here!
Today’s Eat: Spicy Mango Poké Bowl made by myself and the #kwalkhypeteam
The process 🥣: My favourite parts were ripping the seaweed, peeling the onion, and squeezing and mixing the mayo and sriracha to make Spicy Mayo. I have been dreaming about trying my Mango Pulp. I can’t wait to see how it tastes, but I think I will marry it. The prawn and crab smelled sweet. Making your own poké is LOTS of work. I wouldn’t recommend it. 1/5⭐️
Eating It 🍴: Wow! This was scrumptious and amazing! So it was a little bit restaurant-style, it didn’t taste homemade (to toot my own horn 🎺). The Mango Pulp was a little bit sour and juicy. Mixed with the Spicy Mayo it tastes sugary and creamy. I would get more and eat it again. I recommend you try my Spicy Mango Poké Bowl! 5/5⭐️
Ingredients: Sushi rice, mango pulp, spicy mayo, alfalfa sprouts, cucumber, red onion, avocado, corn, prawns, crab, seaweed, and sesame seeds.
Since we left Vancouver on Tuesday morning, our days have been pretty busy! We drove a full day to Clearwater, BC where we camped before continuing on to Mt. Robson Provincial Park for a night. We had planned to spend 3 nights there, but with our delayed departure due to travel restrictions, this was the part of our itinerary we had to shorten up which is unfortunate as we had a beautiful camp spot in the forest with mountain views between the trees. We’ll definitely go back there one day.
We arrived early enough in the day to fit in a bike ride up to Kinney Lake – the first stop on the way to the famous Berg Lake at the base of Mt. Robson. It was 7km one way uphill to the lake, falling the river the whole way. We were able to ride almost the entire way without walking! Stacy and Oliver had to jump off their bikes during some of the steeper sections to push the back of June’s bike trailer to help her and I get up those parts. Pulling an extra +/- 100lbs uphill makes for an excellent leg workout. The ride back down was worth the effort – 15 solid minutes of fun, fast downhill riding!
We’ve now made it to Hinton AB, just east of Jasper National Park. We’ve been enjoying (socially distanced) visits with Stacy’s sister playing disc golf and going to the local bike park. June had an exciting ride down one of the trails here too (see video – she was not hurt)!One more day here before heading east to Edmonton.
Rainbow 🌈 Bit cupcakes with vanilla whipped frosting and rainbow sprinkles; made by myself and the #kwalkhypeteam
Making the Cupcakes 🧁: We poured in the cake mix, my first favourite part was cracking the eggs. Then we mixed in the ingredients and cooked them in the oven. My next favourite part was putting the cupcake in my hand and playing with it. I turn cupcakes upside down and roll them in sprinkles because I have Rett Syndrome and limited hand use, this is the easiest and most fun way to decorate! I love it! 4/5 ⭐️, would make again.
Eating the Cupcakes: I loved them! They were moist and sugary. The bottoms got a little bit burnt so they were a little bitter but the icing helped. I enjoyed the crunchy sprinkles. They looked pretty and colourful! 5/5 ⭐️, would eat again
We made it to Vancouver, picked up June from Canuck Place (where she had a great stay – thank you CP team!), and settled into our spot in Vancouver to wait out the end of the BC travel restrictions. We’ve been on a couple of walks and are also using our time to tweak a few things in the RV. June seems to be feeling better the last few days also – more alert, happy and comfortable, which we are very thankful for. Today she even tried some ice cream! Tuesday we head east!
We are excited to be posting content about Kayla Walker and her food blog. Kayla is 19 years old and loves to have fun and spend time with friends and family. Kayla’s mom, Christinea, is the president of RSSBC. Her food blog is on Instagram: @kwalk.eats
We are very happy to introduce a new ongoing segment in our news! Josh McCulloch and his family have currently embarked on a journey across Canada in their RV. Josh and his wife have two kids, and one of them, June, has Rett Syndrome. Josh has given us permission to share his story and we are excited to post their updates and follow their adventures!
Sincerely,
The Rett Syndrome Team
May 9
From Josh:
Things are starting to feel very real! We have been filling our storage locker, selling off items we don’t want to keep, and generally purging. We’ve been madly ordering items we need for the RV, and trying to figure out storage, organization, and overall details for living in an RV full time.
Next week is my last week at work. The following week June goes to Canuck Place while we finish packing up, and after that, we’re out of our house and off on some sort of an adventure. Honestly, it’s been a bit anticlimactic – with the pandemic and current travel restrictions we really aren’t sure where we’ll be in a few weeks, and for us, part of the fun of travel is anticipating what’s coming. We’ve had to make a couple of different backup plans in case restrictions continue or change, but we know we’ll have lots of fun and make lots of memories.
Last weekend we got out on our first test trip with the new rig. While there were some hiccups and challenges, overall it went quite well and everyone had a good time!
Next week is full of various appointments for June, including one with an Ear, Nose, and Throat specialist we’re very much looking forward to. For years now we’ve always thought June’s internal bleeding has been coming from her stomach and esophagus. But with a recent endoscopy showing nothing significant (again), and some other clues suggesting her nose, we are now quite suspicious that June’s sinuses might be the source of the bleeding. She’s had a couple of days this week with full bags of blood draining from her stomach, so we’re hoping this appointment helps us get to the bottom of this!
It’s finally here! Our annual fundraiser is up and running, however, this year it looks a bit different! This year you can purchase your tickets online! No more need for paper booklets, collecting change, and mailing checks. Simply follow the link, purchase your tickets and share this post with all your family and friends! This fundraiser offsets all or most of our operating costs all year so we need to make it a huge success, please share this link as much as possible and good luck to everyone that enters.
Please join us for our annual general meeting. All members need to attend this ONE meeting on an annual basis to ensure we can continue to support families. This is your time to ask questions and have your voice heard. So far all those on the board would like to carry on their titles and duties. However, if you would like to put your name/skillset forward we would be extremely grateful and welcoming. The Value of One, The Power of Many. Please contact info@rettbc.ca for the Zoom link!
Note: This AGM is for mostly incumbent members and families of RSSBC. If you have any questions contact info@rettbc.ca also.
Here is the itinerary so you know what will be happening!
RSSBC AGM 2021 Itinerary
Approval of Minutes
Approval of Agenda
President’s Report by Christinea Walker (year in review, goals for the future)
Vice President’s Report by Leigh Anne Stitt
Treasurer’s Report by Katheryn Shantora
Fundraising Coordinator Updates by Christine Little
UBC student, Vivian Hou, reached out to RSSBC in June of 2020 to offer her amazing drawing/sketching skills. Vivian spent months creating a new tool for children to understand why their peers are both similar yet different. This amazing tool was built into a coloring book that can be used in both school or community engagement settings. To view Vivians amazing work, please click on the link below to download. Thank you Vivian for your amazing talent and dedication.
UBC student Arlena approached RSSBC in 2020 just after the pandemic hit. She has been building RSSBC’s newsletter designs and sending them to all our members and supporters on a regular basis. She has found new programs to make this not only easier for the society but also more appealing for those to read and continue to stay informed. With Arlena’s help, we have been able to send out a newsletter each quarter meaning families and supporters are gathering up-to-date information about what is happening with the society and ways they can get involved. Thank you Arlena for taking the time out of your busy schedule to support RSSBC!
Kathryn Shantora is the co-founder of RSSBC. She helped build the community well before RSSBC was established in 2013. She hosted/supported multiple meetings and connected with many families giving them a place to feel safe while talking about daily challenges. Kathryn’s busy schedule meant she was not able to take on a large role with RSSBC but she has always been a supporter, attending every meeting, every fundraiser and offered emotional support to all those that she met. In 2019 RSSBC was elated to hear that she was able to take on a larger role. We know we are in great hands having Katheryn as treasurer of the society. Thank you for being such great support for all.
Christine is a veterinarian by trade and has been a huge asset to our organization. She comes with a medical background and is able to put medical terminology to plain language. Christine works tirelessly on creating snapshot reports on research papers all while finding ways that RSSBC can raise funds to ensure our programs are secured. As a fundraising coordinator Christine has learned a lot this past year and a half and we hope to continue to work with her in the future. Thank you for all your time and efforts Christine.
Karl, a web designer and father to a child with Rett Syndrome connected with RSSBC after his child was diagnosed. He offered up his skill set to help develop a new website, promoting not only the society but to help get resources and information to families and supporters in a timely and efficient manner. Karl spent a year creating and building the new Rett Syndrome BC website. He continues blessing RSSBC with his skill set and meets regularly with the team to ensure the website continues to run effectively and has current information. Thank you so much for all you do Karl! We are forever grateful.
Alice has been volunteering with RSSBC since the summer of 2020. She was instrumental in our Rett Syndrome awareness campaign in October. She tirelessly contacted every mayor/city in which a person with Rett Syndrome lived in BC, asking for a light-up event and/or proclamation. It was because of her efforts that we had 10 locations light up around BC and received 15 proclamations. She also wrote feature stories about those with Rett Syndrome that were posted to our social media outlets in October which was seen by over four and half thousand people. Alice’s self-driven personality has been a huge assist and we look forward to continuing to work with her.
Entrepreneur, Leigh Anne Stitt has been volunteering with RSSBC for two years. She reached out to RSSBC after her niece was diagnosed. She wanted to help not only her niece and family but others like them. Leigh Anne accepted the Vice President position and has been a huge assist to the society. Leigh Anne brings a large company business background that has benefited the society time and time again. Thank you, we are forever indebted to you, Leigh Anne.
High school student, Rachel Kwong has been volunteering with RSSBC since August 2020. Rachel has been working on perfecting RSSBC’s new website. Each week she looks at the website and ensures that it is current, appealing, and easy for all to use. Without Rachel, RSSBC would not be able to keep our community informed and up to date. Thank you for all you do Rachel!
UBC student, Tiffany Wai has been a volunteer with R.S.S.B.C. for just over a year now. She contacted the society in 2020 just after the pandemic first hit. She was looking for a way to apply her skill that would serve our community. Throughout the year she took on multiple roles such as social media marketing and newsletter writer and later became secretary on the board.
Tiffany has been a huge asset to the RSSBC team and all the families that we serve.
The Value of One, The Power of Many, reflects on the awe-inspiring acts of kindness by millions of individuals AND the magic that happens when we work together towards a common purpose. Therefore RSSBC will be showcasing one amazing volunteer per day throughout the week describing how their efforts have impacted RSSBC and the families we serve.
Keep up to date by following our Instagram account at @ rett_syndrome_bc
Here is Day 4 of our Easter Survival Tips! We would like to remind you that every child is different and unique and responds to stimuli in different ways. Here is what worked for us!
Finally, plan ahead. You know your child better than anyone, so anticipate trouble spots before they happen. Pack a busy bag for church, seat your child far away from a well-meaning relative who’ll try and force unfamiliar foods on him, or pair your kiddo up with an understanding cousin who’ll help her navigate the kids’ table. Then relax and enjoy making memories with your family!
Keep up to date by following our Instagram account @rett_syndrome_bc
Here is Day 3 of our Easter Survival Tips! We would like to remind you that every child is different and unique and responds to stimuli in different ways. Here is what worked for us!
Go candy-free. Children with special needs often have some sort of food restriction. Eliminate the issue by filling your Easter eggs with toys instead. Consider fidget toys, bubbles, Silly Putty, pencil grips, novelty erasers, toy cars, ear buds, balls, money, and Lego figurines. If you’re giving a treat to a child on a special diet, be sure to run any food items by mom and dad first to make sure it’s not on the restricted list.
Keep up to date by following our Instagram account @rett_syndrome_bc
Here is Day 2 of our Easter Survival Tips! We would like to remind you that every child is different and unique and responds to stimuli in different ways. Here is what worked for us!
Adapt your Easter Egg hunt. No one is less happy than a kid with an empty basket at the end of an Easter egg hunt. While it may be tempting to hover nearby and help your child find his eggs, there are ways to adapt your hunt so he can be successful on his own. The first step is to lay out the rules: Everyone stops after finding X number of eggs, which gives slower children more time to look for their eggs without fear of them all being found. Or try assigning each child their own colour to find. Talking eggs give an additional auditory clue and are also great for kids with visual impairments. One of my favourite home visit activities this time of year is an egg hunt inside a sensory bin (usually rice). Because it’s one-on-one, each child has as much time as they want to find their eggs and it’s an activity that is easily adapted to each child’s needs.
Keep up to date by following our Instagram account @rett_syndrome_bc
Here is Day 1 of our Easter Survival Tips! We would like to remind you that every child is different and unique and responds to stimuli in different ways. Here is what worked for us!
Put down that Easter bonnet. The adorable smocking on that fancy Easter dress or the stiff dress shirt and tie might feel a little itchy to a typical child, but to a child with sensory issues who over-registers sensations, it could very well be unbearable. You might be able to compromise by letting her wear a favourite t-shirt underneath or letting him wear his Superman socks. But if not, you might just have to let it go. If you just can’t bear to let her wear her beloved sweatpants today, at least pick out an outfit that’s soft and comfortable. Make it special by choosing holiday colours or adding holiday accessories.
Keep up to date by following our Instagram account @rett_syndrome_bc
I would like to take a minute and say thank you for visiting our website. Learning about Rett Syndrome can feel daunting regardless of the reasons you are doing so. However, know that you are not alone. We at R.S.S.B.C. are here to support you whether you have a relative with Rett Syndrome, are a friend supporting a family with a child with Rett Syndrome, are seeking volunteer opportunities or you simply just want to learn about it.
Whatever the reason we thank you for taking the time to learn more about Rett Syndrome. This disorder is complex and changes lives but we have seen some amazing resilience grown from it. Not just in the children affected by it but rather their entire communities, including parents, siblings, relatives, friends, teachers, therapists and so many more. Each child is unique and special just like all of us. Their journeys may look different and take a few extra twists and turns but all any parent wants is for their child to be loved and included within their own communities. If you are reading this website and letter, you are part of that community for someone very special regardless of whether you know them yet or not.
Our website was built to allow anyone to access information about Rett Syndrome, our society and resources that families can take advantage of. If after looking on our website you still have questions we encourage anyone to contact us. We would be happy to speak to anyone interested in Rett Syndrome.
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!
