'There are days she wishes she wasn't born like this'
“I never want her to feel invisible … but sometimes it would be nice to not be so seen.”
Family Life
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Mia Stewart is a sunny, wise 10-year-old with bouncy curls who loves her netball, swimming and dancing just like any other school kid.
But behind the grin is a frustration, as she battles aches, pains, and exhaustion every time she keeps up with her peers.
When Mia was nine months old, she was fitted with a prosthetic leg.
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It’s the reason she has more grace and grit than some people’s pinkies – especially those who glare every time she’s in public.
Her mother Leila’s biggest worry when it comes to her daughter isn’t how she will handle the world, but how the world handles her.
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“The staring is the worst. We’d rather you come and chat with us,” Leila tells Kidspot.
Sometimes, the most obvious offenders are adults.
“Kindly approach and say ‘hello, do you mind if we ask you about your leg?’,” Leila suggests.
“It’s tricky as some people may not want to chat … but we prefer it, we see it as an opportunity to educate. Each interaction is one less person who might stare at someone else.”
“There was no stopping her”
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"We knew there was no stopping her"
The Sydney schoolgirl was born with a rare, non-genetic limb difference called proximal femoral focal deficiency (PFFD), causing her to have no femur or hip socket on one side.
The condition is rare, affecting only 1 in 500,000 to 1 million births.
It was a rollercoaster of emotions for Leila and husband Brent, when Mia’s condition was picked up during a pregnancy scan before Christmas in 2014.
The first-time mum spent days crying, and Doom-scrolling on Google, while dealing with the impossible suggestion she could end the pregnancy.
Making the easy choice to meet their baby, the parents knew after birth Mia would prove doctors wrong.
While Mia was born with a limb deficiency, her left leg shorter than her right, it was not as bad as previously thought.
“We were worried about what she might not be able to do, but she quickly proved us wrong,” Leila says.
“She was so strong. She hit all the ‘typical milestones’ and started pulling herself up. We knew there would be no stopping her.”
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“It’s like she was born to tackle this”
Mia got her first prosthetic leg at nine months and stepped with a walker at 18 months.
After exhaustive fundraising by her parents, Mia had a 12-hour surgery in the US, a Paley brown modified rotationplasty, to remove her leg and reattach it backwards so her ankle acted like a knee, making her a below knee amputee.
She had to re-learn how to walk and has had three surgeries since then.
“It’s like she was born to tackle this. She is so determined and strong. She truly takes everything in her stride,” Leila says.
While Mia’s resilience blows her parents away – there are moments of heartache.
“It’s the days she wishes she wasn’t born with her leg this way,” Leila says. “It’s like a punch in the tummy, it breaks every part of you hearing it.
“We allow her space to feel that, but we explain she can’t get stuck in those feelings because she is so amazing and capable.”
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Proudest moment for Mia is sport and kindness
The family share Mia’s journey online at Mia’s Big Adventures, to raise awareness of limb differences and foster kindness.
A proud moment for Leila and Brent is seeing their daughter “confidently tells inquisitive kids about her leg”. But for every kind interest, there is a cruel stare.
Leila has had to bite her tongue too many times, like when kids called Mia’s leg ‘weird’, or when strangers judged a younger Mia resting in a pram.
“I can’t imagine what it feels like to go out and not want to jump in front of your kid from prying eyes, scream out loud not to stare, and not have to bury that frustration,” Leila shares on Facebook.
“I know it doesn’t come from a bad place, so I bury that internal urge to snap, I chat politely about Mia, I do this for her because I want her to be comfortable in her skin.”
“I never want her to feel invisible … but sometimes it would be nice to not be so seen.”
Other times the champion mum is as loud as possible. Like cheering on Mia at her first swimming carnival.
After shrugging off nerves and children questioning her ability, Mia swam a lap like her friends.
There was a moment of panic where she froze in the water, but with mum’s tough love and her teacher’s encouragement, Mia swam to the end.
Now she is in a competitive swim squad.
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Mia will be tuning into the Paralympics
Asking Mia of her proudest moments, she says, representing school in netball for two years and making swim squad. As well as being kind.
“Our friends’ kids see Mia for Mia, most people that know her forget she even has a prosthetic leg,” Leila says.
Mia and her family hope Aussie parents tune into the Paralympics this week, to encourage conversations with kids about diversity and respect.
“It breaks down the stigma that people with a disability are less capable. It shows everyone that disability is nothing to shy away from, anything is possible if you give things a go,” Leila says.
“I hope other parents are out their teaching their kids the importance of kindness and that the world is made up of all different people and that’s what makes it so interesting.”
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Mikayla has sporting ambitions
Another family tuning into the Games is Tamika Bax and her daughter Mikayla, who has a limb difference and defied odds since birth.
The mum-of-three was told to abort her baby when a 19-week scan revealed her daughter was missing an arm. But Tamika chose life, and now her four-year-old daughter swims, runs, climbs and begs her brother for a wrestle.
Tamika initially worried how her daughter would get dressed and go to the bathroom – but as Mikaya grew, Tamika too realised her limb difference was never going to slow her.
“She can get dressed, she can put her shoes on, she can climb with one arm,” she says.
“Mikayla is a social butterfly. I was the one with worries, however she has shown me how independent, brave and confident she really is.”
Tamika says events like the Paralympics show families and children how “a physical difference does not define you”.
Mikayla is about to start Little Athletics, does gymnastics, and has contact sport on her mind.
“Mikayla loves sport; she gets her brother to tackle her and says she is going to play football. I on the other hand don’t see me coming to terms with that,” her mum jokes.
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