Kennedy Shannon and her mom have booked their flights and Airbnb for Kennedy’s stay at the Mayo Clinic Hospital in Arizona, the destination she’s heading to next month for the life-changing surgery she needs. And it’s all thanks to the help of her community.
People in the area have hosted hockey tournaments, pie sales and this Friday, a chicken dinner with more pie, to help raise the money the family needs to pay for the surgery in Arizona booked for May 16.
Kennedy was born with pectus excavatum, a condition involving a depressed chest cavity. It impacts about one in 150 to 1,000 births, though Kennedy’s case is much more pronounced than most. As a child, Kennedy says the condition didn’t impact her too severely, but as she grew into her teens and now young adult years, it became worse and worse. Medical imaging shows her organs are squished together, with her heart sitting on top of her stomach. She suffers from shortage of breath and high heart rates of up to 180 or 200 beats per minute even when completing simple tasks like folding laundry, making a bed or going up stairs, she says.
The surgery to correct the condition involves inserting metal bars into the chest to reform the chest cavity, and then removing them later. A patient in Canada can receive two bars at most, says Lori Shannon, Kennedy’s mom, but her daughter requires four.
Staff with the Ontario Health Insurance Program say that the surgery is performed in Ontario and have not committed to paying for the surgery in the United States, though the Shannons could not find a local surgeon able to perform what Kennedy needs.
The Shannon family launched their GoFundMe campaign in January to have Kennedy’s surgery performed in Arizona. The most recent estimate the family received from the Mayo Clinic for the cost of the surgery is US$102,000 or about CA$140,000, but they’ll only know the total cost of the surgery after it’s complete, depending on how long and how many resources her recovery takes. Then, four years later, she will need to return to Arizona to have the bars removed, which will also cost more money.
The family’s GoFundMe now reflects more than $47,500 raised, but this does not include the amount from a February pie fundraiser done by Fran Adsett, owner of Frannie’s Restaurant and Bakery in Breslau, or tomorrow’s chicken dinner hosted by local barbecue take-out restaurant, SmokinQ.
Adsett said she heard about Kennedy on the news while in bed one night, and decided to help out by doing a pie fundraiser, and donating a portion of each pie sold. She estimates she made about 500 pies for the cause.
“I’m always looking for different fundraisers in the community and I try to do my part,” she said. “I try to help out people the best that I can. You know what, I was a single parent once upon a time and I had such an amazing community when I raised my kids and it takes a village to raise a child and no matter how old they are, they still need love and still need help.”
Adsett will be donating pie to go with SmokinQ’s barbecue chicken dinner as well.
Cherylanne Weber of SmokinQ heard about Kennedy through her nephew, Kennedy’s boyfriend. She got involved because she could relate to the Shannons’ experience.
“Our own personal family, when our kids were young, we had a lot of major medical expenses and our son had cancer and so we know what kind of stress that can bring and the finances and we had a lot of people band together for us. And so I just wanted to give back to the community that way again, to help them out.”
The meal costs $25, and the proceeds will be sent to the Shannon family and also used to partially cover the costs.
The deadline to order ahead was Wednesday, but Weber says people can call on Friday to order the meal, as she is making extra. Pick up will be on April 21 from 4-8 p.m. at the SmokinQ’s Wallenstein location, 7215 Wellington Road 86.
Weber says she has many people stepping up to offer help to prepare and serve the meal, and even to direct traffic in the parking lot for the pick-up day.
“The biggest thing is just to help out community – we all might face a time in life where we need a helping hand. So however we can support each other and help each other through tough times, I think that is what makes us a stronger community,” she said.
“The support from the community has been so, I can’t even describe it. It’s so heartwarming, the complete strangers. Frannie of course, doing a pie fundraiser. I didn’t know Frannie at all. I’ve been to her restaurant twice before her doing this. Not just her, everybody who’s done this – the Sugar Kings, the Lions Club. The support has been so overwhelming not just from organizations, but from just general people that we don’t even know who are contributing to our daughter,” said Lori.
“It’s been crazy,” said Kennedy.
Lori Shannon says she isn’t holding her breath that the province will step in and pay for the surgery, but in case they do, she says the money raised will be held in a separate bank account for four years for when Kennedy’s bars need to be removed. If the province steps in to pay for the removal surgery, then the money will be sent to another pectus excavatum patient who needs help, or toward another pectus excavatum-related cause.
Kennedy is nervous about the surgery, as there is a chance her chest could fracture during the procedure. That said, she is also excited for the possibilities after the surgery is complete. Her first activity after she’s healed from surgery?
“Probably go on a hike with my boyfriend,” she said. “Maybe somewhere near Hamilton.”
She also wants to give words of encouragement to others who may be in her situation.
“If [people] know someone with pectus excavatum, and they have symptoms, or anything related to it, just know it’s not [necessarily] cosmetic. And they’re not crazy. And I want people to also fight for their health care and fight for what they know is right. And they know their body,” said Kennedy.
“You have to be your own advocate,” said Lori.