Congenital heart disease and time in the hospital doesn’t stop 4-year-old Tori Bryan from living life like any other child.
Tori Bryan is a fiery 4-year-old with bright red hair who loves to imitate her older sister, Kylie. She likes to climb, play in the dirt, and do everything the older kids do.
But perhaps Tori's most distinguishable feature is her relentless heart.
Tori was born with congenital heart disease and was given just a 50 percent chance of survival.
“She's technically a miracle baby,” Tori's father Greg Bryan said. The Bryans live in Camdenton.
Tori has had to endure a total of five surgeries throughout her life. Tori had just a 50 percent chance of survival for four of those surgeries. One surgery, involving her stomach, just gave Tori 25 percent chance of surviving.
“She's amazing,” Greg said. “She is a 4-year-old who has no idea she is sick,” Greg said. “Her disability doesn't stop her one bit.”
Greg said that Tori is just as hyper and active as any child. The doctors have told the Bryans to expect her to get winded and tired easily, but Tori shows no signs of that. Greg said Tori's heart condition has slowed down her growth development.
“She has the physical body of a 3-year-old, but the mental capacity of a 4 to 7 year old,” he said.
Her father said that Tori doesn't mind going to the hospital, besides the shots.
“She likes going to the hospital, to be honest,” he said. “The nurses spoil her. She gets a lot of ice cream, so it's like a holiday for her.”
But it's different for Tori's 8-year-old sister, Kylie.
“Kylie takes it harder than anyone in our family,” their father said. “She gets sad. We don't hide anything, so every time we have to tell [Kylie] there is a 50 percent chance we may lose Tori.”
This year, before Tori's fifth surgery, the Bryan family was faced with another tough task when they were told Medicaid would no longer help fund the surgeries. Greg works on Fort Leonard Wood and was informed he made too much money to qualify for federally backed health care.
“For most of Tori's life, Medicaid was covering what my insurance wasn't paying for with the surgeries,” Greg said. “So, now when my daughter goes in for a $3.5 million surgery, I have to fund 10 percent.”
Greg said Tori's next surgery, which involves rerouting one of her major arteries, will cost a total of nearly $4.5 million. For each surgery, the Bryans travel to Children's Mercy Hospital in Kansas City to get the care they need.
After learning of the Bryans' need for support, family friends decided to create a fundraiser for Tori's family – Heart for a Heart.
Heart for a Heart events will include a poker run, silent auction, raffle, chili cook-off, live entertainment and games for children. Four-year-old Tori will also speak at the event, which kicks off at 11 a.m. Saturday at the Pulaski County Shrine Club.
“Pulaski County has really pulled together and said, 'we know you're daughter, we love her to death, let's make this benefit as big as we can,” Greg said.
For questions or donations, contact Anthony Bowman at 573-855-0047.