By Howaida Sorour-Roberts
A fundraising buzz has taken hold in Smiths Falls to raise money for a little girl born with an extraordinarily rare genetic disorder — Everley Yolkowskie. Family friends Amanda Fournier and Rachael Bell organized a huge fundraiser on Saturday July 16 to help raise money for the family and needed treatments for Everley.
“We raised $10, 259 and donations are still coming in,” said Fournier, a friend of the Yolkowski family and fitness instructor at The Shift, in Smiths Falls.
Taking over the Smiths Falls Memorial Centres’ ice pad the two family friends organised an insanity class, silent auction and bake sale to raise funds for baby Everly who is one of just 1,000 people in the world with CCHS (Congenital Central Hypoventilation Syndrome). The condition causes Everly to stop breathing when she falls asleep.
“Right now the fundraising allows us to be with Everly at the hospital because we’re self-employed,” explained Sarah Patterson, Everly’s mother, a nurse and personal fitness trainer who with her husband, Jordan Yolkowski, runs and owns the gym The Shift on Bay Road in Smiths Falls.
So far, little Everly has spent 80 per cent of her life in a hospital. She’s six-months old but has only spent five weeks at home in Smiths Falls. The rest of the time she’s been at the Children’s Hospital of Eastern Ontario (CHEO).
A full term baby, there was no indication during the pregnancy that there could be anything wrong. “I had a wonderful healthy, healthy pregnancy,” said Patterson. “She was resuscitated immediately at birth.”
To help her breath when she’s asleep Everly had to have a tracheostomy — a surgically created hole through the front of her neck and into her windpipe (trachea) that is hooked up to a ventilator while she’s sleeping.
To further complicate things, when Everly finally made it home to Smiths Falls, she’d only been there for five weeks when she had a seizure. She was rushed to Perth and Smiths Falls and District Hospital and was quickly transferred back to CHEO. “That’s when they diagnosed her with a glucagon malfunction,” said Patterson.
It turns out that Everly is likely the first person in Canada to suffer from this even more rare condition. When Everly’s blood sugar levels drop, her pancreas doesn’t produce the glucagon that normally tells the liver to convert stored carbohydrates into sugar, instead she goes into a seizure or passes out.
Everly is still at CHEO because she has to be hooked up to monitors and a feeding tube to control her blood sugar and prevent any more seizures. But she’s a fighter. “She’s the happiest baby you’ll ever see, she’s inquisitive, she smiles, rolls over and does all the things a baby does, but because of the tracheotomy, she makes no sounds,” said Fournier who is close to the family.
Patterson and Yolkowski have the added challenge of trying to make a living while getting to know their daughter. “So I’ve been full-time at the gym while Sarah’s at the hospital,” said Yolkowski, who like every other loving father just has one wish. “I just want to see Everly live a happy, normal life.”
The plan is to get Everly to the U.S. to the Lurie Children’s Hospital of Chicago, one of the most advanced centres for autonomic pediatrics in the world. The cost is expected to come in at $180,000, not including the cost of flying Everly there by helicopter – another $50,000. Paterson and Yolkowski are working with CHEO to explore the possibility of some OHIP coverage.
“Everly is so happy and thriving and she gives us the strength to just keep going,” said Patterson.
In the meantime numerous fundraising events are being held in Smiths Falls, because Everly’s condition means she will always need medical intervention to live. “There’s been an outpouring of support and love from the community,” said Patterson, tearing-up.
Photo submitted: Jordan Yolkowski with his wife Sarah Patterson and their daughter Everly.