Wondrous Willow

Wondrous Willow Follow us as we document and share Willow's metamorphosis as she navigates life with INAD.

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

Please excuse our recent silence - our hearts are heavy.The end of summer has become an easy, yet incredibly painful, po...
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 🤍🦋

Fantasyland Getaway, Day 3.Miss Ma’am loved sleeping in her space pod. Knowing the kids’ beds were bunk beds, we brought...
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 whirlpool bath 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 🤍

Fantasyland Getaway, Day 2 - it was a whopper! We had the forethought to bring muffins and fruit for an in-room breakfas...
26/08/2026

Fantasyland Getaway, Day 2 - it was a whopper!

We had the forethought to bring muffins and fruit for an in-room breakfast, which helped keep the cost of the trip down while also maximizing our time in our cool space-themed room. Two birds, one stone!

After our feast, we kicked off the day by checking out the rock and gem show that had taken over the Ice Palace for the weekend. There were so many neat things to see - we left with lighter pockets, but heavier bags.

Later, we headed off to the sea lion show. Before the it began, they brought out 2 penguins, which was an instant hit with our family. But the show itself became particularly memorable when Miss Ma’am’s big brother was selected to come down and dance with a sea lion during the demonstration!

Afterward, we made our way to the indoor theme park, Galaxyland. Knowing Miss Ma’am is a bit of a thrill-seeker and absolutely loves rollercoasters, that’s where we started. Watching her laugh and squeal with delight made the whole experience that much sweeter for us.

We wrapped up the day by ordering dinner to our room and settling in for a family favourite movie of Ron’s Gone Wrong. By the end, everyone was exhausted, but in the best possible way.

It was such a fun-filled day, and somehow, there’s still MORE to do 🤍🎢 🪐🌌

Operation WOW (Willow's Outing Wishlist) took us to Fantasyland Hotel for an entire weekend stay in a space themed room,...
25/08/2026

Operation WOW (Willow's Outing Wishlist) took us to Fantasyland Hotel for an entire weekend stay in a space themed room, chosen by her older brother.

Day 1 we spent settling into the coolest hotel room we've ever been in. Miss Ma'am most definitely loved the giant whirlpool bath tub that her brother dissolved half a Lush bubble bar in - so it was exploding with bubbles everywhere! She was overjoyed by that, cuz in case you didn't know... Miss Ma'am absolutely loves bubbles!

We all loved the room so much that we decided to order our dinner right to the room and hunkered down for the evening to enjoy the... space 😆🪐🌌🚀✨

Please remember our little Willow. The girl who loves bubble baths 🤍

Being a medical family isn't for the weak.The entire journey to getting Willow diagnosed was exhausting. But the truth i...
20/08/2026

Being a medical family isn't for the weak.

The entire journey to getting Willow diagnosed was exhausting. But the truth is, post-diagnosis hasn't been easier. The appointments, clinics, therapies, monitoring, consults, follow-ups… it’s a lot. And somewhere along the way, our world got smaller.

As Willow’s needs grew, so did the distance between us and the life we once knew. I don't think most mean for it to happen, but our circle significantly shrunk. Unless you have someone in your household with significant medical/mobility needs, it’s difficult to understand just how much planning, energy, and accommodation goes into something as simple as leaving the house.

Eventually, the invitations became few and far between. And when they did come, they were sometimes followed by, “We didn't think you'd be able to make it work with Willow's needs." At first those comments were completely understandable - we have complex needs, and things aren't simple anymore. But over time, the contrast between our life before this journey and our life now has become impossible to not notice.

That contrast taught us something we didn't fully understand before: being a medical family can be incredibly isolating. Not because people don't care or because they don't love us. But because life keeps moving, and sometimes those living it alongside you don't realize how far behind you can feel when your world has become so much smaller. It took more than a year to really see the difference - but there's a difference, and it's sad.

Miss Ma'am deserves to experience the fullness of what the world has to offer while she's still here and able to enjoy it. She deserves birthday parties, adventures, friendships, spontaneous plans, messy memories, and all the beautiful little moments that make childhood childhood. Her medical journey shouldn't have to mean a smaller life. As her family, we'll keep doing everything we can to make sure it doesn't. But it certainly has highlighted a reality we've come to know quite well:

Being a medical family isn't for the weak.

Our fierce INAD fighter has unfortunately come down with a UTI. Because Willow is also non-verbal, deciphering her behav...
13/08/2026

Our fierce INAD fighter has unfortunately come down with a UTI. Because Willow is also non-verbal, deciphering her behaviour and cues when uncomfortable or in pain has become somewhat of an art. What began as a single new, questionable behaviour grew concerning when others began stacking as the day went on. Thankfully Willow has a medically complex/high risk paediatrician whose office called back at 8 o'clock at night to say they were giving her an early appointment the next morning to investigate - so it's now being managed.

However, that threw off the posting schedule we had in sharing some precious moments. More to come, of course. The priority is always going to be Miss Ma'am's health and well being, though. Thank you for your patience 🤍

Have you heard of iKare4Kids? If not, Miss Ma'am is here to encourage you to check them out.iKare4Kids provides tablets ...
08/08/2026

Have you heard of iKare4Kids? If not, Miss Ma'am is here to encourage you to check them out.

iKare4Kids provides tablets to medically complex children, helping them stay connected with loved ones while making appointments, therapies, and hospital stays a little easier.

When their founder, Deanna, reached out and suggested Willow might qualify, we discovered the existing criteria didn't quite fit our situation. Because Willow has Infantile Neuroaxonal Dystrophy (INAD), there is no curative or life-saving treatment - only life-sustaining therapies. Deanna brought this to their board, and they expanded the eligibility criteria to include children like Willow.

A few days later, a volunteer arrived with a bag full of goodies and a tablet for Willow. We are so grateful for organizations that recognize and support families like ours.

If you're a medical family, we encourage you to see if iKare4Kids can help. And if you're not, please consider supporting their mission so they can continue making moments like this possible 🤍

https://ikare4kids.com/

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