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Ciara's smile (6 photos)

One little girl with a rare condition is a beacon of positivity

Ciara Pelletier-Lebouef, 7, was born with one leg shorter than the other but from just measuring how active she is you’d never know.

Ciara was born with both Pierre Robin Sequence (PRS) and the rare birth condition Focal Femoral Hypoplasia (FFH).

From her PRS she was born with a cleft palate and some smaller features in her head and face while her FFH has affected the growth of her right leg, which at the moment is about half the length of her left

“FFH is already rare by itself and I’ve only ever heard of one other person having both (disorders). The doctor’s basically call it a fluke,” said Ciara's mom Christina Lebouef.

A typical pregnancy is around 40 weeks and Lebouef said that her daughter was born via C-section after she stopped growing in the womb at 35 weeks.

She was born 9 a.m. in Windsor and flown out at 7 p.m. to London for emergency medical procedures.

Although Lebouef was still in pain from the surgery, doctors told her that if she wanted to see her daughter she'd have to get out of bed.

“I was still hurting from the surgery, it was brutal, I can still feel it,” said Lebouef.

Lebouef said that over the years they've gone all across Ontario seeing specialists about Ciara's condition and that she's seen her daughter overcome so much pain.

“After having Ciara, at the time, we didn’t think we would have any more children. The thought of chancing having another child who would have to go through that was too much,” said Lebouef.

The family eventually moved back to the Sault, where both Lebouef and husband Michael Pelletier are from, so that they could have a bigger support network around them.

However, even though Ciara’s been through so much she has one of the most positive attitudes.

She is an incredibly happy and friendly little girl who's open to being friendly with stranger and gets along great with her brother and sister.

She loves to run around the yard playing tag, jump on a trampolines, ice skate, climb on the playground, and even ride her bike, which is hand-crank powered and has been especially modified to accommodate her leg.

Various other technological aids help Ciara have this active life.

Until last year she wore specially made platform shoes which were actually just regular running shoes that a specialist sliced apart and added lifts to.

As Ciara grew each year, the Sudbury prosthetics specialist that designed the shoes would add layer after layer until they basically became impractical.

In December of 2015 she started using a custom prosthetic leg with crutches - a faster and safer system.

The prosthetic actually requires three shoes to be worn: two for Ciara’s feet and one for the prosthetic foot which extends directly below her right foot.

From trying to find the right type of shoes to be modified for the platforms, to now having to use two pairs on her current set up, Lebouef is going broke buying footwear.

“I’m always blowing money on shoes and I want to get her good solid ones because she needs them. When she had the lifts I would buy pair after pair trying to find the right ones to be modified,” she said.

A positive of the new prosthetic is that Ciara is now able to wear sandals and she loves her new My Little Pony flip-flops.

Lebeouf said that many adults and especially children ask about Ciara's prosthetic leg.

“Especially kids, who are naturally innocent and curious. Sometimes she gets a bit bored with it. I feel like she wants people to just get over it and say ‘let’s just play, don’t worry about it’,” said Lebouef who, like her daughter, is also very positive.

She added with a smile, “It’s just another one of those things.”

Jeff Klassen

About the Author: Jeff Klassen

Jeff Klassen is a SooToday staff reporter who is always looking for an interesting story
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