Winnie’s World: Childhood Physical Disabilities, PFFD, Big Energy & The Biggest Heart
Winnie is part of the Cool Crutches community and someone we’re incredibly proud to spotlight. A young girl with a bright smile, boundless energy, and more determination than most adults, Winnie’s journey is as unique as she is. Told through the words of her wonderful mum Kate, this is a story of adoption, resilience, rotationplasty, and a little roller-skate magic that got it all started.
Winnie’s Story Begins
Winnie was born in Armenia, which is where we adopted her from. We then brought her home to the UK, where we lived for four years before moving to Canada where we still are now. She was born with a condition called PFFD (Proximal Femoral Focal Deficiency). In her case, this meant she was born without a left hip or thigh bone. At four years old, Winnie underwent a complex 13-hour surgery known as rotationplasty - a rare procedure that turned her small leg 180 degrees so that her backward-facing foot could power her prosthetic as a working knee. She lived with a 10cm limb difference when we adopted her, and due to bringing her home just before COVID hit, my husband built her first prosthetic from a roller skate and wood. It was the first time she’d ever been upright and able to move around.
Life with Cool Crutches
Winnie has been using Cool Crutches for around two years and they’ve been nothing short of life-changing. Before we found Cool Crutches we struggled to find anything that didn't break. She’s 25kg and loves to sprint on her crutches, so the rivets were always breaking on cheaper ones! Cool Crutches were the first that could keep up! For Winnie, it’s not just about practicality (though they’re strong and lightweight). It’s also about fun. She loves the designs - her friends even want to borrow them to play with! She has the Rainbow and Rainbow Zebra designs but her dream crutches for when she's older are Gold Glitter. When we moved to Canada without a prosthetic, she was on crutches all the time. The Cool Crutches design made such a difference in winter. They meant she could wear coats and gloves without needing them altered or adapted.
Comfortable and fun kids-specific crutches have made such a huge difference to the community. It’s meant everything to us that Cool Crutches makes them with children in mind.
Daily Challenges
Unfortunately, unless you live with a disability or support someone who does, it’s really difficult to understand how small things we take for granted can be such big challenges. We recently learned that it takes Winnie 50% more energy than her peers just to stand up from sitting. This really adds up over the day.
More awareness around disability always helps. It’s been especially hard with Winnie because she participates in everything! Ice skating, swimming, ninja - but people don’t see what happens when she gets home. They don’t see the toll it takes on her to participate at the same level. We also think the medical systems don't put enough focus on pain management, especially with kids. They don’t like to use pain medication, but if they're living with constant, even low-level pain, then removing that can change everything: how they sleep, how they walk, and how they face new challenges.
What Helps
For Winnie, we’ve always said that her primary disability is the trauma from living in an orphanage. Her physical disability comes second. As parents, we’re still learning, but the biggest shift for us has been realising that it’s not one big thing that helps - it’s 20 little things. Things like high electrolyte supplements, high Vitamin D, and flexible seating at school so she can stand while writing if that uses less energy.
We adopted Winnie five and a half years ago, and we’re still figuring out what works for her and us, and what doesn’t.
Struggles
For me as a parent, it's been finding the right medical professionals who will support us when we have a gut feeling something’s wrong. We’ve seen Winnie go from being completely fine to hitting rock bottom in a matter of hours. It’s incredibly tough when you’re not being listened to. And for Winnie, her biggest barrier is that physically she won’t stop when she needs to. For example, when the school organised cross-country. Her age group was doing 250m, and we agreed she would do a 70m walk, which she did happily until she decided to sprint another 50m on her crutches to get in a photo!
Another big challenge for any child with a prosthetic is growth. She’s constantly growing, so it’s either too big or too small!
Advice For Others
You’ll have to fight medical teams to get what your child needs. Join Facebook groups and communities, that's what's been essential for helping us to educate ourselves so we can advocate and challenge when needed. Also, if you have other children, balancing their needs equally is really hard. A child with extra needs takes more time, more energy, more mental space - it’s a constant juggle, but be kind to yourself.
The best advice I was ever given:
“Meet your child where they are emotionally, not where you wish they were.”
That’s hard to do, especially when their day looks the same but feels completely different.
📣 What's Coming
We’re launching something very close to my heart, inspired by years of medical appointments, both from my own childhood and now with Winnie.
It’s called Petit Papillon Papier, and our first product is a beautiful, practical planner designed to support anyone juggling complex health needs - whether it's for yourself, a child, or someone you care for.
When you’re trying to keep track of medications, specialists, appointments, and just life, it’s very overwhelming. So we wanted to create something that helps people feel more in control, more prepared, and gently supported.
We’re also donating 5% of all sales to our charity, Blue Bear Family Foundation, which helps children like Winnie find their forever families.
A huge thank you to Kate for so generously sharing Winnie’s story with us. Your honesty, and strength as a mother is truly inspiring. We’re so grateful to have you both as part of the Cool Crutches community💛
If you would like to feel inspired by other incredible young people that have been dealt a tough hand in life but continue to show strength, we recommend these:
