Josh’s Journey: Part 3

From Josh:

May 29, 2021

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.

Kayla Eats: Rainbow Cupcakes!

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

-Kayla

Josh’s Journey: Part 2

From Josh:

May 23, 2021

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!

May be an image of child and outdoors

Josh’s Journey

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!

iPad Raffle!

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.

https://rettbc.rafflenexus.com/

AGM Reminder and Itinerary

AGM 

May 2nd @ 7:30pm via Zoom 

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

  1. Approval of Minutes
  2. Approval of Agenda
  3. President’s Report by Christinea Walker (year in review, goals for the future)
  4. Vice President’s Report by Leigh Anne Stitt
  5. Treasurer’s Report by Katheryn Shantora
  6. Fundraising Coordinator Updates by Christine Little
  7. Voting of Board Members
  8. New Business
  9. Next Meetings

Hope to see you there!

-The RSSBC Team

National Volunteer Week- Vivian Hou

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.