By Andrea Rose
Special to The Record
Nobody plans for their child to get sick or for their lives to get turned upside down, but it happens to families right here in our community. This glimpse into reality comes from Shayne Boelk, father of Tori Boelk, whose journey has not been an easy one, or a short one, but it has been one that began with a glimmer of hope from YANA.
Tori’s journey with YANA dates all the way back to 2007 when Tori’s Mother was pregnant with twins and was admitted to St. Joseph’s hospital with labour complications that resulted in devastating news.
“The OB came over and wanted to have a chat with us and brought a chair with him, and when that happened, I knew we were in pretty big trouble,” said Shayne. “And then what he told us is that we lost her sister. And that’s when things go sideways.”
After discovering that Tori’s twin had passed, they worked to stave off the threat of preterm contractions to ensure that Tori could continue to safely grow in utero for as long as possible. It was in between the flurry of activity, right before Tori’s mother was air-lifted to Vancouver to be closer to more acute medical care, that a nurse stuffed an envelope into her hand containing money with a note from YANA. The couple was overwhelmed with the generosity from their community, but it wasn’t until much later in their journey that they would reach out to the organization for further support.
After arriving in Vancouver and looking more closely, Tori’s medical team discovered a congenital cardiac defect that would require open-heart surgery shortly after birth. The heart defect was the result of a microdeletion, DiGeorge syndrome, which would present myriad health complications and challenges after Tori was born. The couple stayed for the three months leading up to her birth and didn’t return home with her until after her first birthday.
|Tori Boelk was born with a congenital cardiac defect that required open-heart surgery shortly after birth. Photo supplied.
It’s been over 13 years since the family has known YANA as an anchor that has allowed them to focus on Tori’s health and wellbeing and not the financial worries that weigh heavy on so many families in similar situations. Shayne describes that without YANA, the last 13 years would have been “stressful, financially ruinous, draining, and a major distraction from what’s important.”
In 2008, after the family returned to their home in the Comox Valley, they found themselves making trips for days or weeks at a time for surgeries and clinics to address Tori’s complex needs. It was then that they were connected to YANA again through the grapevine of the special needs supports they were accessing for Tori.
“We were pretty overwhelmed and maxed out by the time we finally connected with YANA. Being away from home for a year, still paying all of those bills, and also carrying rent and living expenses in Vancouver was a lot,” Shayne said, commenting on how quickly it became apparent how unique YANA is to this community.
Many families receive hospital emergency funding, an envelope with $200 cash and a letter from YANA to connect for further support given to families who are required to emergency transfer for medical care from the Comox Valley Hospital. Presently, only about 40 per cent of recipients connect for further support, something that the organization is working to change in hopes that all families will benefit from the full depth of relief YANA can provide, something Shayne quickly discovered after making the connection to YANA.
“One of the things that’s almost universal, none of those parents plan for that stuff to happen. You don’t plan for life to get derailed, and it happens a lot… and all of a sudden there’s a YANA there.”
Tori is almost 14, she has a vibrant and infectious smile, and Shayne beams with pride as he speaks of her strength and resilience. Tori continues to make multiple trips to address many of the challenges she faces each day, and the family continues to be overwhelmed with gratitude for the support they receive from their community through YANA.
“I can not convey what an amazing program that YANA is. I have met many people at BCCH (BC Children’s Hospital), and when they ask where we are staying and I tell them about YANA, their jaws usually hit the floor,” says Shayne. “The fact that it is managed privately and is a product of the Comox Valley and the people who run it, is awe-inspiring. I can not think of a more worthy charity for people to get behind.”
YANA’s support is available to any Comox Valley family required to travel for the medical care of their child or a pregnant mother. YANA’s programs are made possible thanks to the enormous hearts of the generous people of this community, helping families know in some of their most difficult moments that You Are Not Alone.
Andrea Postal is a member of the client services team for YANA.