Rainbow š Bit cupcakes with vanilla whipped frosting and rainbow sprinkles; made by myself and the #kwalkhypeteam
Making the Cupcakes š§: 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 āļø, 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 āļø, 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. Weāve 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 donāt want to keep, and generally purging. Weāve 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, weāre out of our house and off on some sort of an adventure. Honestly, itās been a bit anticlimactic – with the pandemic and current travel restrictions we really arenāt sure where weāll be in a few weeks, and for us, part of the fun of travel is anticipating whatās coming. Weāve had to make a couple of different backup plans in case restrictions continue or change, but we know weāll 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 weāre very much looking forward to. For years now weāve always thought Juneās 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 Juneās sinuses might be the source of the bleeding. Sheās had a couple of days this week with full bags of blood draining from her stomach, so weāre 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,Ā 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.Ā Thank you Vivian for your amazing talent and dedication.Ā
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!
