It’s been a series of ups and downs for Ciara Pelletier-Lebouef since day one.
The nine-year-old was born with Focal Femoral Hypoplasia, a rare condition that has severely affected the growth of her right leg.
“It’s been really challenging, to say the least,” said Christina Lebouef, Ciara’s mother. “Everything sort of has to be adapted.”
As Ciara grew, so did her need to adapt.
“At first she just had a really big lift on her shoe to try and even out, but as the difference in length got to be too big, so we couldn’t really do that anymore,” Lebouef said. “We had to get the prosthetic from War Amps, which thank God they cover, because we could never afford it.”
War Amps – now in its 100th year of existence – says that she’s eligible for financial assistance from the organization to cover the cost of artificial limbs and recreational devices.
In addition to the financial assistance, Ciara also gets emotional support from annual War Amps seminars.
She recently attended the War Amps 2018 Ontario Child Amputee (CHAMP) seminar in Toronto, where Ciara and her parents received guidance in terms of parenting and dealing with bullying over the weekend-long event.
Lebouef says this year’s seminar was an “amazing experience.”
“For that time, she’s with tons of kids that have the same, you know, prosthesis, or something the same,” said Lebouef. “It’s really hard during the year because a lot of the kids don’t have the prosthetics.”
Ciara attends Holy Family Catholic School just off of Goulais Avenue, where she has an educational assistant who works with her.
She gets around the school with the help of crutches and a walker. The school also uses a wagon for her in the winter so that she can go out into the school yard and play.
“The school is very accommodating, very helpful,” Lebouef. “They’ve always been good with bringing in extra equipment for her.”
While Lebeouf has nothing but praise for her daughter’s school, she acknowledges that Ciara grows tired of having to explain herself at times.
Some children at school occasionally have to be pulled aside by Lebouef or a teacher in order to be educated about Ciara’s condition.
“Kids don’t know what it is,” Lebouef said. “Sometimes they’re nervous like, ‘what is that? We don’t understand.’”
“Once they understand what’s going on, they’re usually pretty good,” she continued. “The more that the kids understand it, the more that they’re comfortable with it.”
A passion for sports
Ciara isn’t allowing her condition to keep her away from her love of sports.
With the emotional support of her parents and three siblings, she takes on a variety of activities with enthusiasm.
She attends karate classes regularly, where she’ll spend the first half of the class using a wheelchair, and the second half of that same class using her prosthetic.
“She knows how to do it in a way that manipulates the muscles and keeps them strong,” Lebouef said. “It’s just been great for Ciara.”
“It gives her an inner strength, while also doing physical therapy at the same time.”
Ciara also began playing sledge hockey last fall, after Lebouef saw an ad on social media.
She plays on a team called the Soo Sledgehounds with five other kids at John Rhodes arena. Most of her teammates are in their teens, and Laboeuf says that Ciara is by far the smallest player on the team.
The sledge hockey squad even got a chance to show off its skills during an NHL alumni game at the Essar Centre.
Lebouef says that she’d like to see the sport grow in the city.
“I’ve been speaking with the ladies and gentlemen on the board, and we really want to push it, because it’s something that we’d like to get more kids involved [in],” Lebouef said.
“Hockey’s a big thing in this city, and we don’t want kids to feel like they can’t play because maybe they have a disability, or maybe they have a special need of some sort.”
“We don’t want her to sort of fall back into…’I can’t do that, I have this leg that doesn’t work quite right’,” she continued.
“We want to sort of push her to always know that she can achieve whatever it is, regardless.”
A fork in the road
Lebouef says that her family will soon have to make a decision that could possibly change young Ciara’s life.
“Her legs will need to be straightened out because her hips are not secure,” Leboeuf said.
When Ciara’s legs are straight, however, her right knee doesn’t bend with the prosthetic on.
The family is currently exploring all options in terms of surgery, but a lot of it hinges on how strong her hips would be in the future.
Whatever happens, Leboeuf says that her surgery will be funded by War Amps.
“We’re getting to sort of a fork in the road where we want to help Ciara to be able to be as mobile as possible,” Lebouef said. “One of the options that’s on the table is a possible amputation.”
In the end, all Lebouef really wants for her daughter is for her to have the chance to live out her dreams and chase her ambitions in life.
“We just want her to be able to do whatever it is she wants to do, without any hindrance,” Leboeuf said. “Just to be able to be free.”