‘It’s about living’: Hundreds walk in Frisco to support congenital heart defect research

When Laurie Phan and her husband, Phanzy, learned their son, Sloan, had a congenital heart defect, each Google search they typed out seemed to return answers they didn’t want to hear.
“Obviously you just want to know what to expect, but when you Google stuff like that, there is so much stuff about the cause of it and the life span and it’s just so sad,” Phan said.
The couple was fortunate to find a medical team that knew how to treat Sloan’s condition. He had his first heart surgery when he was 10 days old and his second at six months, Phan said.
Phan was among the hundreds of people who participated in the Children’s Heart Foundation’s annual Dallas Congenital Heart Walk on Saturday morning at Riders Field in Frisco. She walked as part of the Tiny Heart Crusaders team, which included some of the doctors and nurses who took care of Sloan through his procedures.
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Seeing Sloan as a happy 3-year-old boy enjoying life one tricycle ride at a time, brings a special type of joy to Phan.
Meeting other parents who also have children born with congenital heart defects reminds her of the painful times, but seeing the hundreds of supporters Saturday gives her hope.
“Hearing adults that have grown up with it and survived, certainly gives us a lot of hope,” Phan said. “It definitely makes us look forward to the future.”
The Children’s Heart Foundation raised more than $126,000 through this year’s charity walk and silent auction. More than 660 people registered for this year’s event. The Dallas-area heart walk is among 33 similar events nationwide, according to the foundation.
Walkers were greeted by the Texas Rangers’ Six Shooters cheerleading team and heard from families affected by congenital heart defects.
This year’s event featured a booth to honor “heart angels,” a title the foundation gives to those who lost their lives because of a congenital heart defect. Attendees also got to meet other families of “heart warriors” — people who are living with a congenital heart defect.
Forney resident Bobbi Bondarenko said her 15-month-old son, Dakota, needed life-saving surgery because of his heart defect. Although the experience was as traumatic as it was terrifying, Bondarenko said her friends and family were the pillars of support she needed to get through her tough times.
“It’s a crazy thing to think about, but you learn that there are others who are going through similar situations,” Bondarenko said.
All funds raised from the event will go toward congenital heart defect research, said Ashley Hurley, the foundation’s Texas region leader. About 40,000 babies are born with congenital heart defects each year.
Hurley got involved in the Children’s Heart Foundation and the annual walk around 2018 through a friend whose child is a heart warrior.
“I believe this allows just our heart families to continue to spend time with, their time and resources really, with their loved ones,” Hurley said.
Bethany Ramsey said research into congenital heart defects is an issue that is close to her and her husband Brandon Ronasi. About a year ago, their daughter, Blake Marie, was diagnosed with a rare condition called aberrant right subclavian artery, or ARSA.
When their pediatrician in Dallas told the couple that they didn’t know what to do, Ramsey said she felt defeated.
“She was on a feeding tube and she would turn blue, choking on her own saliva,” Ramsey said. “It was a lot.”
She said her family found doctors in Boston who had more knowledge about ARSA, and Blake Marie, who is turning 2 years old in October, got on a treatment plan.
“There’s just a lack of funding, lack of knowledge. It’s a long road for many of these families and a lot of them probably felt like us; defeated and helpless,” Ramsey said.
Lyndi West, who lives near Corpus Christi, participated in the Saturday walk as part of Show With Your Heart, a nonprofit that organizes livestock shows to raise money for congenital heart defect research.
West’s daughter Taylee has had five open heart surgeries in her 11 years of life.
When Taylee was first diagnosed with a rare congenital heart defect, West said her family did not know who they could turn to.
“I started digging and doing a lot of research to help us get through and along the path, I wanted to do something for other moms who are also not knowing what to do,” she said.
The organization has raised more than $160,000 in the past seven years, West said.
Taylee loves to raise livestock and is living to her fullest. She said lambs are her favorite animals to show, but she has experience with pigs, goats and horses, too.
“Our message to others is it’s not just about surviving, it’s about living, also,” West said.