By Naseem S. Miller, Orlando Sentinel (TNS)
ORLANDO — Before Holden’s less-than-perfect heart gave out last year, when he had gotten too weak to stand on his two little feet, and when he had to spend days at the hospital for one of his four surgeries, he loved to parade around the hospital floor in a little wagon.
The wagon had a pole that held his IV bags, and with that, the 2-year-old, whose parents had nicknamed the Tin Man, could get out of his room at Arnold Palmer Hospital for Children and move around the place that had become his second home.
“It was basically his moment of being a child when he was in the hospital,” said Holden’s dad, Joseph “Trey” Flynn. “He felt most comfortable in that wagon.”
Holden Flynn, born in October 2011 with a congenital heart defect, died in January 2014. He was waiting for a heart transplant.
The Flynns had been wanting to start an organization for congenital heart disease. “Holden’s passing emboldened us even more,” Flynn said. “We said this is something we can do; we can make a difference in Orlando.”
They teamed up with a couple of other families they had gotten to know in their congenital heart disease journey and created a foundation last year in memory of Holden. They called it Yellow Brick Road.
They have big plans for their young foundation. They want to raise awareness about congenital heart disease and help families with their medical bills. They’ve started providing small care packages to the families in the hospital. Eventually, they hope to offer high-school scholarships.
But first and foremost, they are raising money to buy specialized wagons and donating them to local hospitals and practices so that other little kids can have their own parade, too.
Congenital heart disease is not rare. Nearly half a million adults in the United States live with it, and approximately 1 in 100 babies are born with it.
“Some forms are minor and easy to take care of, but at the other end of the spectrum, there are some very, very challenging abnormalities, for example like the one Holden had, that really challenge even modern medicine,” said Dr. William DeCampli, co-director of the heart center and the chief of pediatric cardiac surgery at Arnold Palmer Hospital for Children.
Yet with advancements in diagnosis and surgery, more babies are surviving. Congenital heart disease is a chronic condition and is rarely limited to just the heart. Many children have gastrointestinal issues. They don’t gain weight. They’re developmentally delayed.
“People think you get surgery and you’re done, but the reality is that every single day there’s something,” said Krista Conners, who is on the board of Yellow Brick Road.
Her daughter Brenna, 10, has a milder form of congenital heart disease. She has more specialists than you can count with your fingers. “Therapies and doctors’ appointments are a part of our life,” said Conners.
Conners met the Flynns through the local chapter of Mended Little Hearts, a support group for families of children with heart disease, launched in 2012.
“I remember not being able to pronounce Brenna’s defects…” Conners said. “How did we go from holding our baby to her being on a ventilator? It’s just unbelievable. The feeling of not being able to hold your baby is horrible, horrible.”
Aside from emotional stress, many families have to cope with financial challenges
Juan Gonzalez left his job after his son Monroe was born with congenital heart disease in November 2013. Monroe died in January 2014, never leaving the hospital. Gonzalez and his wife, Sara, now are part of the Yellow Brick Road board.
“My personal goal is awareness,” Gonzalez said. “Getting parents to ask the right questions and for people to have it in the back of their minds that there are these defects that can fly under the radar. So helping people to cope and supporting them financially is huge.”
The Flynns donated the first specialized wagon to Arnold Palmer Hospital in December. The wagon cost about $900, and they hope to raise funds to donate more of those wagons to local institutions. They’ve also been donating smaller wagons with IV poles, which cost about $200.
“It’s nice to be able to get the kids out and about,” said Mike Seeman, whose son, Easton, was at Arnold Palmer last week, tooling around in the wagon. He was born with a congenital heart defect and a host of other issues.
“When we first came to the hospital, Yellow Brick Road wasn’t around, and Mended Little Hearts was still growing, so we were on our own. But it’s been nice since we’ve joined them. It’s like a sounding board.”
“We don’t want this to be one of those foundations that start out, burns through all their money and the next thing you know, they’re no longer a foundation,” said Trey Flynn, who’s an attorney in the public defender’s office. “We’re going to do this right.”
(c)2015 The Orlando Sentinel (Orlando, Fla.), Distributed by Tribune Content Agency, LLC
Image: Jaxson and Easton Seeman, 3, play in a wagon donated by the Yellow Brick Road foundation in the Pediatric Cardiovascular Intensive Care Unit at the Arnold Palmer Hospital for Children on Tuesday, Feb. 24, 2015, in Orlando, Fla. (Ricardo Ramirez Buxeda/Orlando Sentinel/TNS)