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!

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