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Wondrous Willow, Spruce Grove, Alberta (2026)

16/10/2026

“Sweet ride!”

Words we heard from a group of teenagers while zipping around the neighbourhood in Willow’s brand-spankin’ new adaptive Power Wheels.

A heartfelt thank you to The Brick for sponsoring Wondrous Willow’s sweet ride through Variety - the Children's Charity of Alberta's Go Baby Go program. It took us a while to get here - originally approved at the beginning of 2026, we had a few hiccups along the way, including showing up to a gifting event last month only to discover the ride built for Miss Ma’am was much too small. Understandably, they’d planned for an average sized 5yr old. Surprise! Our girl is off the growth charts in the 99th percentile and wearing clothes sized for an 8yr old.

But last Friday, we got the VIP treatment. The Brick invited us to their Edmonton corporate office, where the team built her a ride that fit and decorated it with all her favourite things: butterflies, bubbles, rainbows, kitties, and stars. She was nervous at first, but once she gave it a try, she was ready to cruise. And her favourite part? Having her big brother run alongside her as she zipped around the neighbourhood.

Thank you to The Brick for going above and beyond for our family, and to Variety Club for programs like Go Baby Go. For families like ours, these opportunities mean so much more than a toy. They create moments of joy, freedom, and inclusion in a world that isn’t always built with our kids in mind. And our little girl deserves every bit of it 🤍🏎️

12/10/2026

We, the Walters family, have much to be thankful for.

Not only are we grateful to experience the unique light that is Wondrous Willow, but we’re grateful her spirit chose us to be her family, and for the path that choice led us down.

Through Willow, we’ve come to realize how many beautiful hearts exist in this world. Hearts like yours (yes YOU, reading this now).

Every time you read one of our posts, every time you take a moment to bear witness to Willow’s life, you become part of something that means more to us than we could ever adequately put into words. When we share Willow with the world, we’re trying to hold on to every piece of who she is. We’re trying to ease the fear that as INAD takes more and more from our daughter, the world might one day forget the little girl she was before it did. The feisty, beautiful, wondrous little soul who changed our lives in ways we’re still learning to understand. And you show us that she is seen. That her life matters. That who she is matters.

We don’t know if we’ll ever find the right words to express the depth of our gratitude in a way that truly conveys what that means to us. But we hope you know that we see you and we see the effort.

To the community that has rallied around Wondrous Willow and our little family of four, that has lifted us up in ways both big and small, and that continues to show up for our girl: we see you, we feel your kindness, and we are profoundly grateful for you.

Happy Thanksgiving from our family to yours.

08/10/2026

Our fierce little INAD warrior had her second ever surgical procedure of getting ultrasound guided Botox injections deep into the muscle tissue in her hips, legs, and ankles yesterday morning. The hope is it will yield similar results as the first time she had this done in early summer, where the muscle relaxes enough that it alleviates some pain and discomfort and makes it easier to walk and move around.

She did even better this round than last - popped right up like the cutest little daisy in the recovery room, looking a fair bit disoriented and bewildered. We were on the road home in less than half the time of her first go at this, and it was remarkable how well she did once home. We spent the day cuddling and watching StoryBots, nibbling on foods that were easy on the stomach and just taking it easy.

Thank you for holding space for our family during this time. Please continue to keep her in your thoughts as we see how well her body tolerates this new and increased round of injections 🧬🤍💉

05/10/2026

Big things for Miss Ma’am this week.

After a follow-up appointment with her physiatrist, we learned that her first round of Botox treatments done at the beginning of summer was a great success. As her parents, it was incredible to see the difference it made. She was in significantly less discomfort and pain, her leg braces went on more easily, and she was walking better. Seeing her more comfortable and moving a little more freely was such a gift.

But as it goes with Botox, the effects have long since worn off. So this week, Miss Ma’am will be going in for a second treatment. This time, the injections will not only be in her legs and ankles, but also in her hips - where the stiffness and rigidity have increased as well. That means she'll be under general anesthesia longer, with more injections and more areas of soreness to manage afterward.

It's never easy watching your baby be put under for a medical procedure, no matter how routine it may be. There's always nerves, that knot in your stomach, and a wish to take it all on for her.

So, please hold our little girl a little extra close in your thoughts this week. Here's to hoping this round brings Miss Ma'am some much needed comfort, less pain, and a little more freedom in that beautiful, determined body of hers 🤍

26/09/2026

Meet Miss Ma’am’s newest doll addition - Willow!

Feel Better Friends is a wonderful organization that creates handmade, look-alike crocheted dolls for children facing serious illness or disability. Their incredible volunteers in several countries have gifted hundreds of these special dolls to children and families who could use a little extra joy while navigating their medical journeys.

We feel so lucky that Miss Ma’am now has her very own little Willow, made by volunteer Donna in British Columbia. There’s something incredibly special about seeing Willow with a tiny version of herself - leg braces and all!

We also want to use the small platform we’ve built to help spread the word about this organization. If you’re able, please consider learning more about Feel Better Friends or donating to their mission. Organizations like this make a real difference for families like ours. You can learn more about requesting or supporting a doll in Canada here:

https://fbfdolls.org/request-a-doll/doll-requests-in-canada/

Thank you Feel Better Friends for bringing a little extra magic into Miss Ma’am’s world as she navigates life with INAD 🧬🤍🧶

25/09/2026

One of our favourite things about Miss Ma'am is her ability to locate the nearest flower and make a bee-line (😆) right to it to smell them 🐝 Every grocery store, garden centre, and display, you can be certain she'll sniff it out.

These past couple weeks have been a struggle. At the suggestion of Willow's school team, we're making small, incremental changes to her routine in class to introduce her wheelchair. It's... heartbreaking. She'll still utilize her walker to get around. But certain activities at school are becoming more concerning as time goes on; things like positioning when eating, or how comfortable she can be during periods of time where she needs to sit to participate in class.

We're not ready for how quickly INAD is taking our little girl's light from us - she deserves to shine.

Please remember our Willow. The little girl who loves smelling flowers 🌹

18/09/2026

Having a medically complex kiddo affects the entire family - especially when that kiddo is terminal. That is the reality our family is navigating.

Wondrous Willow has Infantile Neuroaxonal Dystrophy (INAD). She also has the absolute best big brother the universe could have given her. Trexton has the tenderest heart, and he's Willow’s most favourite person in the entire world.

We’ve quickly learned how to advocate for Willow as her needs increase. What we didn’t anticipate was how much we would also need to advocate for her big brother. There are days when Trexton's especially sad or emotional, and when we talk with him about what’s weighing on his heart, it often comes back to his sister. His grief, worry, and love for her - the reality of watching someone he adores change in ways he doesn’t fully understand. As Willow’s needs intensify, we’re finding that school, extracurriculars, friendships, and even ordinary childhood moments all require a little more attention to make sure Trexton’s emotional well-being isn’t lost in everything our family is navigating.

This is one part of being a medical family we never saw coming. We knew we would have to fiercely advocate for Willow. We didn’t realize we'd also have to learn how to advocate for the little boy standing beside her.

Because Trexton deserves support too. He deserves space to grieve, to talk, and most importantly, space to simply be a kid - even while his world looks very different because of his little sister’s diagnosis.

10/09/2026

It's been an eventful week for Miss Ma'am.

Between routine therapies, appointments at the Stollery Children's Hospital, Operation WOW (Willow's Outing Wishlist) race car rides, and beginning her first days of her kinder year at school, we've been busy - and it's not going to slow down any time soon.

Our hearts are still aching during this transitional time from summer into autumn. And while we don't want these media pages to be a total emotional dumping ground, we do want to share our experience. Our grief is a measure of how deeply we love, and while Miss Ma'am is still very much alive and full of energy, we're sad that this is the hand she's been dealt.

Here's a short video Mama captured of Miss Ma'am. A soft hearted gentleman in our community generously donated his time and race car to drive Willow around, emulating the feeling of a rollercoaster. She thoroughly enjoyed it, and kept using her AAC device to say "fast" and "rollercoaster". By the end of the ride, she was getting incredibly sleepy, though.

Please remember our precious Miss Ma'am. The little girl who loves going fast 🤍

03/09/2026

Please excuse our recent silence - our hearts are heavy.

The end of summer has become an easy, yet incredibly painful, point of comparison as we watch Willow's progression.

At the end of last summer (2025), she had just gotten her first walker and was stubbornly adjusting to navigating the world with it. Now, at the end of this summer (2026), we’re staring down the barrel of her needing to use a wheelchair - it’s heartbreaking.

At the end of the summer before that (2024), she was still able to wobbily traverse the little field behind her school to get to her Early Intervention class. And the summer before that (2023), she was running through our local splash park with relative ease.

Willow has always been a little more unbalanced than most. In fact, the beginning of our medical journey started with me joking with our family doctor during her routine two-year checkup that if there were a diagnosis for clumsiness, she would surely have it. Thankfully, our doctor clocked that and referred us out - that action ultimately set us on the path to her diagnosis.

Now the end of summer has become the point of comparison for us. Our hearts are heavy as we see, year by year, just how quickly Infantile Neuroaxonal Dystrophy is stealing pieces of our girl away.

So please... when you think of our precious Miss Ma’am, remember her for the feisty, fiery, fearless little thrill-seeker she has always been. Remember the girl who ran through splash parks, stubbornly learned to use a walker, and never let a little wobble stop her from getting where she wanted to go. Please don’t let INAD become how you remember or describe her.

She is much more than this condition 🤍🦋

27/08/2026

Fantasyland Getaway, Day 3.

Miss Ma’am loved sleeping in her space pod. Knowing the kids’ beds were bunk beds, we brought a blanket to tuck underneath the top bunk. It made the bottom extra dark and created a divide, meaning Willow could sleep without being distracted by other things - movies, Mum/Dad on phones, or the bathroom light coming on. Big brother claimed the top bunk when we booked this getaway, but he also loved going in her pod cuz the blanket made it feel like a cozy den.

We started our last morning with another in-room breakfast of parfaits and muffins - a Miss Ma’am fave. Since it was our final day and the jacuzzi tub was a hit, Mum fed kids while they enjoyed one more dip bath. Not a bad way to start the morning!

Checkout went smooth, then it was off to begin the rest of our day. We met Auntie Jenn, who had planned to spend the day with us as we headed to the indoor WaterPark! Willow remembered the place immediately, since her brother had his birthday party there just 2 weeks earlier. We knew exactly how excited she was because she was immediately angry that she wasn't in the water RIGHT. NOW. We first had to find seats, drop our bags, get her changed, and get everyone pool-ready. Waiting around at the WaterPark? Absolutely unacceptable to Miss Ma’am.

Because of our recent experience there, we knew to bring her some water socks this time. Infantile Neuroaxonal Dystrophy (INAD) has taken away her ability to walk without assistance, so she spent most of her time crawling around in the shallow water. Two weeks earlier, by the end of the day, our poor girl’s feet were raw and scabbed from crawling, as she isn't able to fully lift her legs. So this time, we came prepared with something to help protect those little feet.

We finally wrapped up our time in the water around dinner and made our way home. Everyone was thoroughly exhausted, which made for one of the easiest bedtimes we've had in a long time.

Just like that, our Fantasyland Getaway ended. It was an amazing trip - a staycation filled with laughter, excitement, family time, and memories that we'll have forever.

Please continue to follow Willow's story. We don't want our little girl forgotten 🤍

Wondrous Willow

16/10/2026

12/10/2026

08/10/2026

05/10/2026

26/09/2026

25/09/2026

18/09/2026

10/09/2026

03/09/2026

27/08/2026

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