The 2020 Variety Show of Hearts Telethon takes place February 9, and for a second straight year, Chilliwack’s Alessandra Lavallee will be one of the children featured.
Born with significant foot issues because of something called ‘Amniotic Band Syndrome,’ Alessandra needs expensive orthotics as she learns how to walk.
Variety - the Children’s Charity stepped forward with funding to help a determined little girl who is ready to explore her world.
Alessandra has little trouble getting where she wants to go.
An energetic and curious almost-one year old girl, she scoots across the kitchen floor like a bolt of lightning, eager to get into the pots and pans cupboard for some noise making fun.
She follows her seven-year-old brother, Leonardo, wherever he goes and motors over to a soft and squishy dog bed in the family room in those rare moments when she needs to catch her breath.
The only sign that anything’s amiss with Alessandra is her feet.
When she was still in mom Stephanie Lavallee’s belly, the little girl developed Amniotic Band Syndrome.
“We were told before she was born that there were fibers (wrapped) around her legs,” Stephanie explains. “So, on one of her feet it looked like she would only have a heel and the other foot was clubbed. When she was born, the foot that was supposed to just have a heel had half of a foot. It had four toes, all of them pointed down, and the other foot was severely clubbed with the toes all fused together.
Alessandra was quickly fitted for castings, and when she was around 36 months old she got something called AFOs braces.
AFO stands for ankle foot orthosis and Alessandra wears them on both feet for 22-23 hours a day. A hard moulded piece of purple plastic is under her foot and the AFOs wrap snugly around her feet, held in place with straps wrapped around her ankles/shins.
“It’s like braces for your mouth where if you don’t wear your retainer your teeth go back to the way they were,” Stephanie explains.
The AFOs don’t come cheap. They’re nearly $4,000. They’re not covered by the B.C. Medical Services Plan and cost way too much for a single mom surviving on a maternity leave income.
That’s where Variety and its annual Show of Hearts Telethon comes in.
“I reached out to Variety after B.C. Children’s Hospital gave me the information,” Stephanie says. “I couldn’t afford to pay for the AFOs myself, so I sent Alessandra’s story to them and they approved the funding.
“I can’t say enough how thankful we are for Variety.”
Two weeks from now, right around her first birthday on Feb. 13, Alessandra goes back to B.C. Children’s Hospital to see if she needs new AFOs that will cost just as much. Long-term, there may be a surgical option for Alessandra’s non-clubbed foot to bring those four toes up, and the AFOs may be replaced by running shoes that do the same thing.
But those running shoes aren’t going to be cheap either. Stephanie hasn’t gotten up the nerve yet to find out the price-tag, but she’s staying calm knowing she’s got Variety and its thousands of generous supporters helping out.
“It means everything to us. When we were referred to Variety and they agreed to fund Ally, it felt like someone was looking out for her,” Stephanie says. “It’s so heartwarming, and nice to know that there’s good people in this world.”
Approximately one in 20,000 babies are diagnosed with Amniotic Band Syndrome. There’s no confirmed cause, only a theory that it may be triggered when a pregnant mother falls and there’s a rupture of the inner membrane that contains the amniotic fluid.
But then, Stephanie says it’s happened with children whose mothers never took a tumble, so who really knows?
“But when they first told me about it I was thinking, ‘Oh no. If she only has a heel, how is she ever going to walk properly?’” she recalls. “‘If the bands are still wrapped around her legs, can it really cause amputation?’
“All of that went away when she was born.”
The minute Stephanie saw that little face peering back at her, she knew it would be alright.
And if ever Alessandra’s been bothered by it, it doesn’t show in her day-to-day activities.
“She is a go-getter and very energetic,” Stephanie says with a grin. “She’s a bit of a princess where if she wants something she wants it now.
“She’s obsessed with ice cream sandwiches and if she sees me going to the freezer she’ll crawl over as fast as she possibly can. If I unwrap it, she’ll start banging her hand on the table like she’s saying, ‘I want it.’ She can’t say it yet, but you can see it in her face.
“She’s like that with anything she likes.”
The plastic on the bottom of the AFOs are slippery, which make it difficult for Alessandra to stand on a hardwood-type floor.
She can haul herself upright on carpet or any soft surface, and she is starting to furniture surf.
“She pulls herself up on me or anything she can,” Stephanie says. “I feel proud of her that she’s trying and I give her lots of encouragement with, ‘Cmon baby, you can do it!’ I got her one of those little walkers that they can use and I try to get her up and at it.
“She’s taken a couple steps with her AFOs on, and those are steps in the right direction.”
The eight-hour telecast Varity Show of Hearts Telethon will be broadcast live from the Hard Rock Casino Vancouver, between 9:30 a.m. and 5:30 p.m. on Global BC.
Get more info on the Variety at variety.bc.ca/event/variety-show-of-hearts-telethon-2020/