Three things that shouldn’t mix? Gymnastics, Skateboarding, and a missing ACL. Although Matilda Castledine isn’t one to let fibular hemimelia get in the way of doing what she loves.

Matilda was born with fibula hemimelia. A condition that afflicts between five and 20 of every million babies born. These children have a short or missing fibula, meaning one leg is shorter than the other. Many of these children also have a missing anterior cruciate ligament.

Matilda is scheduled to have multiple intense surgeries over the next two years, one being leg lengthening surgery.

Mother and daughter, Holly and Matilda Castledine stand in the doorway as I arrive, Matilda’s eyes lighting up as she runs to eat a cinnamon doughnut from a plate on the dining room table. The house is warm and inviting with loud and colourful fabric draped across the staircase banister. Natural sun lights up the windows, a golden glow flitters over the variety of heart-shaped wire artworks adorning the walls.

At seven years old Matilda started Little Lioness by Tilly, a business selling hand sewn heat packs and bag charms filled with locally-sourced lupin beads available to purchase. The caption of its most recent Facebook Marketplace post reads “Daughter is raising money to buy a puppy for when she is in recovery, she is donating 10 per cent of all profits to the dog refuge.”

“I was born with no ACL, and my knee just keeps popping and popping. That’s why I’m having surgery, so my knee will be a little more stable,” Tilly explains.

“I don’t always explain it to everybody and sometimes I don’t feel like talking about it. Some people ask me why one of my shoes is higher than the other, but people mainly just want to try them on.” 

Holly is a single mother, navigating supporting Matilda through her condition while simultaneously raising two other children. When asked about navigating the fibular hemimelia diagnosis, she lightly sighs and says:

“I called my cousin who’s a podiatrist straight away and asked him to come and have a look. He lined up her legs and he straight away said, no, this is way out of my league. After visiting the children’s hospital, we got a call to come back in because they saw that the ACL was absent and that the femur was about three centimetres shorter than the left. They said they wouldn’t do the surgery yet, because they just want to see how she grows as there are so many complications and it’s so unpredictable.”

Matilda quickly chimes in, with a proud smile she says “I push through, sometimes I get pain but I’m a really fast runner. I overtake most of the girls in my grade, I think my fastest speed is eight seconds.”

Matilda decided at five-years-old she wanted to be a fashion designer, now she runs a small business selling her creations in hopes to raise $3000 to buy a companion dog to accompany her after her various surgeries.

“I would say sewing one of my bag charms takes 25 minutes on average. Some are quicker than others, I have to work out all of the fabric and charms I want to use. Then I sew it and fill it with lupin beads. I usually get the fabric from Spotlight and Officeworks, the rest of it is from my wardrobe. I use some of my old clothes and onesies that I had as a little girl.” She says.

Matilda’s handmade bag charms and heat packs. Photo: Imogen Bell.

Matilda says because puppies are her favourite animal, she will donate 10 per cent of profits to the dog refuge.

“My mum came up with the idea of donating money. Our physio is near dog haven, and it was quite sad to see the puppies in their little cages. So, I thought it would be really nice if we donated money to help them have a little bit of a happier life.”

Holly’s eyes are filled with pride as she says “She kind of caught me at a soft moment, she asked if she could get a puppy so I ended up saying if you make enough from the business. I don’t know if we’ll even get there, but I will somehow make sure we can afford it. I don’t know how I’m going to do it.”

Trainer and skills mentor at Western Australia Assistance and Therapy Dogs Sarah Hagger says animals are proven to improve mental health, but can also be used to assist people with physical disabilities. 

“I think one of the main things that I’ve heard people talk about is the fact that it creates a lot more autonomy because to be registered as an assistance dog, the dog has to be able to do the minimum of three tasks to improve their owner’s way of life,” she says.

“It can take the stress off family members, who are often doing the majority of that support work with somebody within the home. It creates a sense of autonomy, so they’re not constantly having to ask someone, can you please do this?.” 

Running a small business at seven-years-old is tough work, but with the support of other businesses at the Scarborough Markets, Matilda and Holly are working towards their goal.

“When you think of a massive project like starting a business, you get overwhelmed. I feel like if you do one thing a day, whether it be a phone call, a letter, an email, you’ve made yourself one step closer to achieving your goal. Nobody is going to do the work for you.” Holly says.

Matilda’s school community is another important source of support.

Holly explains: “A few little girls at school call it her special leg. We’ve always called it a special leg and not a bad leg. Some of the little girls at school are so cute, they think her shoes will make them run faster. So, at school Tilly hosted a handstand competition and whoever won got to wear her shoes.”

Holly is raising Matilda with a mentality of “brave girls turn into strong women”, hence the business name ‘Little Lioness’.

“I get really upset when she falls and hurts herself, but she just picks herself up and dusts herself off. She is so brave, she will never complain. Not once have I heard her complain, other than that she wants to wear a nice shoe. One day, in the next few years she will be able to pick one but for now we can’t go to the shoe shop and just pick whatever she wants.”

If Holly had to give one piece of advice to anyone reading, it would be to turn a negative into a positive.

“You can say, yeah it’s really hard that we are going through this. But try and think on the bright side. Your choice is to either sit at home and go ‘poor me’, or you can turn around and think what can I do to make today a little bit better.

“The higher you dream, the higher you’re going to go. It’s up to you,” she smiles.