Filling our cups

The end of January has finally arrived – it always feels like the longest month of the year by far. Reflecting back on the past few months, it’s certainly been our signature pattern of incredible highs paired with bumps along the way. We’ve had Simon’s surgery looming on the horizon since the summer, and with the way surgical booking happens in BC, it’s been a true exercise in patience and embracing the unknown. In the fall, we set out to make sure that ahead of the unpredictable surgery date, we did as many things as possible to fill our cups and boost our resilience.

Why such a focus on filling our cups? The surgery that Simon needs is absolutely massive. They’ll be rebuilding the top of both of his femurs and restructuring his hip sockets out of bone from his pelvis. At the same time, they’ll be adjusting one of the existing plates in his knees and adding in two more to assist with the guided growth process of trying to get his lower legs better aligned for less pain and improved mobility. It doesn’t stop there though. They’ll also be putting stabilizing screws in both of Simon’s ankles. UGH! It’s hard to fathom how his little body will handle it all, but we know many Morquio kids who have been through it before and we know how incredibly strong and resilient Simon is. But it’s going to be harder than we can imagine. Mostly for Simon – he’ll be in a full chest to ankle spica cast for at least a month! The logistics are mind boggling given that the surgery and the acute rehab (after the cast comes off) happens in Vancouver at BC Children’s Hospital / Sunny Hill. Simon and I will live at Sunny Hill Hospital in Vancouver for about 2 months so that Simon can get the best possible rehab by being in-patient. We’ll get through it, one moment at a time.

But let’s get back to how we’ve intentionally spent the past 5 months adventuring, building community, fundraising and taking care of ourselves by doing all the things we love as a family (in between weekly infusions and regular trips to Vancouver for appointments)!

We started in September with a trip into Croteau Lake in Strathcona Provincial Park with a few of our favourite people. It was daunting to set out on a 7 km backcountry hike with all of our supplies on our backs, but we did it and we all had an amazing time. It took some creativity and extra umph to support Simon but between his Yeedoo push bike and the big kid backpack carrier we use (Freeloader), we did it! Click on the pic below to watch a little video I put together to catch the magic of the weekend and our first adaptive backcountry adventure with Simon.

Instagram reel @curemps

This hike left my cup overflowing. It was gorgeous, challenging, satisfying, and full of support from amazing friends. It literally couldn’t have been better – we’ve already booked again for next year! Not long after the Strathcona trip we went down to visit some new friends in Seattle who we met through our CureMPS instagram page. Their daughter, Olivia, who is 12, also lives with Morquio. They host an annual fundraising run for I Can and I Will, a fund for uncompensated care at Seattle Children’s Hospital. Connecting with other MPS families is always incredible. Being in the company of people who understand the unique burden of this disease on kids, their siblings and their whole family, is so reassuring and grounding. We plan to make this an annual trip – next time, though, I think we’ll train for the run instead of Trev just jumping in cold to run 5 km!

As we looked ahead, we also wanted to breath fresh life into our CureMPS community as things had gone relatively quiet after our incredibly exciting launch in May. So in October, we officially launched our $100,000 fundraising campaign along with a matching donation of $100,000 that we secured over the summer form an anonymous donor! We wanted to bring our CureMPS supporters together for some fun and to dip our toes into the world of fundraising events. Our first Music Bingo at the Fernwood Inn in late October was a massive success – over 60 people joined and we raised just over $5,000!

There was so much momentum coming out of that event that we decided to plan another one for December! And we raised another $5,000 that night! We loved these bingo nights – they were the perfect blend of community-building and fundraising. With the help of some great friends and the Fernwood Inn, we didn’t have to put too much work into them either – the perfect balance really. People have asked us to make sure we do another one next year, so stay tuned!

Wilderness adventure – done! Fundraising events with our CureMPS community – done! Next up, it was time for a break over Christmas in sunny Mismaloya, Mexico to relax and soak up some sun. Travelling with three kids is never truly relaxing, but we did the best we could and make awesome family memories along the way. It was tough heading home into dark and rainy January at home, knowing that we could get notified of Simon’s surgery date at any time. We had mostly cleared our 2024 plate so that we would be ready to drop everything when we got the date. It felt so strange starting the year knowing that it’s going to be dominated by supporting Simon and the whole family through a very long road to recover. But we aren’t ones to fixate on what’s ahead – if Morquio has taught us anything, it’s to live in the moment and do the best to enjoy what’s right in front of you.

Our final adventure before we hunker down to prep for a mid-March surgery date (which just landed in my inbox today – eeeek!) was an absolutely incredible weekend in Vancouver where we were hosted by Simon’s NHL friend, Ivan Provorov, who now plays for the Columbus Blue Jackets. They met in early 2023 when we were in Delaware for medical appointments at Nemours Children’s Hospital and friends in Victoria got us tickets to the Philadelphia Flyers game. Ivan and Simon hit it off and have kept in touch ever since.

Ivan offered to host us at the game against the Canucks in Vancouver and gave Simon and Spencer (Isabel stayed home – too much hockey for her!) the most incredible experience being immersed with the team for strategy meetings in the locker room, practice skate at Rogers Arena and even reading the starting line-up before the game. Words can’t describe the incredible feeling watching Simon feel so comfortable and appreciated in the company of an entire NHL team on game day. He has a genuine and unassuming way of connecting deeply with certain people – and when that happens, magic truly flows through. It’s impossible to describe, but witnessing it is almost more than my mama heart can handle. The connection between Ivan and Simon is a gift we’ll always cherish. While Simon finds it hard to make meaningful friendships with kids his age, he seems to have no trouble finding his way into the hearts of many. His friendships just look a little different that his peers’.

We’re still absorbing the weekend, but suffice it to say it was just what we need as the final chance to fill our cup before we hunker down for the wild ride ahead. Click on the video below to get a taste of the experience.

Thanks for being here and interested in our journey – we certainly appreciate it.

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