When Laurie Huang and her husband, Fangie, learned that their son Sloane had a congenital heart defect, typing a search on Google seemed to yield answers they didn’t want to hear.
“Of course, I just want to know what happens, but when you Google something like that, there’s a lot of information about what causes it and how long it lasts, and it’s very sad,” Huang said.
The couple was fortunate to find a medical team who knew how to treat Sloan’s condition. The first heart surgery was performed at 10 days old, and the second at 6 months old, Huang said.
Huang was one of hundreds of participants Saturday morning at the Children’s Heart Foundation’s annual Dallas Congenital Heart Walk at Riders Field in Frisco. She was part of the Tiny Heart Crusaders team, which also included the doctors and nurses who treated Sloane.
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Fans get a special joy when Sloane sees a happy 3-year-old boy riding a tricycle and enjoying life one at a time.
Meeting other parents whose children were also born with congenital heart defects brings back memories of difficult times, but seeing the hundreds of supporters on Saturday gives them hope.
“Hearing the stories of adults who have grown up with and survived this disease certainly gives us a lot of hope,” Huang said. “I’m definitely looking 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 one of 33 similar events nationwide, the foundation said.
The walkers were greeted by the Texas Rangers cheerleading team, the Six Shooters, and heard stories of families affected by congenital heart disease.
This year’s event featured a booth honoring Heart Angels, the title given by the Foundation to those who have lost their lives to congenital heart defects. Participants also had the opportunity to meet “heart warriors,” or other families of people living with congenital heart defects.
Forney resident Bobby Bondarenko said his 15-month-old son, Dakota, needs life-saving surgery because of a heart defect. While the experience was frightening and traumatic, Bondarenko said her friends and family were the support she needed to get through a difficult time.
“It’s crazy to think about, but it makes you realize that there are other people going through similar situations,” Bondarenko said.
Kylie Harrington of Oklahoma talks about her son, Hextin Drew Harrington, who was born with a congenital heart defect and died the day he was born. Harrington’s daughter Harper Grace Harrington, 5, and her husband Nate Harrington look on. The Children’s Heart Foundation held its annual walk Saturday to raise money for CHD research. (Chitose Suzuki/Staff Photographer)
Ashley Hurley, the foundation’s Texas regional leader, said all funds raised at the event will go toward congenital heart disease research. Approximately 40,000 babies are born with congenital heart defects each year.
Hurley was introduced to the Children’s Heart Foundation’s annual walk in 2018 through a friend who has children who are also inner warriors.
“We believe this will allow only our emotional family to continue to spend their time and resources with the people they truly love,” Hurley said.
Ashley Hurley, Texas regional leader for the Children’s Heart Foundation, speaks at the opening ceremony of the Dallas Congenital Heart Walk on Saturday at Riders Field. (Chitose Suzuki/Staff Photographer)
Bethany Ramsey said research into congenital heart defects is an issue close to home for her and her husband, Brandon Ronaci. About a year ago, my daughter Blake Marie was diagnosed with a rare disease called anomalous right subclavian artery (ARSA).
When the Dallas pediatrician told the couple he didn’t know what to do, Ramsey said he felt defeated.
“She had a feeding tube and was choking on her own saliva and turning blue,” Ramsey said. “That was a lot.”
She said the family found a doctor in Boston who knew about ARSA and created a treatment plan for Blake Marie, who will turn 2 in October.
“Lack of funding and lack of knowledge. This has been a long journey for many of these families, and many of them probably felt the same way we did: defeated and helpless,” Ramsey said. .
Blake Marie Ronasi, 1, who was diagnosed with a rare disease called anomalous right subclavian artery (ARSA), joined her sister Blair Ronasi, 7, and her mother at Rider’s Field in Frisco on Saturday. Bethany Ramsey participates in the Dallas Congenital Heart Walk with other family members. (Chitose Suzuki/Staff Photographer)
Lindy West, who lives near Corpus Christi, participated in Saturday’s walk as part of Show With Your Heart, a nonprofit organization that hosts livestock shows to raise money for congenital heart defect research. did.
West’s daughter, Taylee, has undergone five open heart surgeries in her 11 years of life.
When Taley was first diagnosed with a rare congenital heart defect, West said her family didn’t know who to turn to.
Taylee West, 11, and her mother Lindy West during the Dallas Congenital Heart Walk at Riders Field on Saturday (Chitose Suzuki/staff photographer)
“I started doing a lot of research and research to help us get through this. I wanted to do something for other mothers who don’t know what to do as well. ” she said.
West said the organization has raised more than $160,000 over the past seven years.
Taylee loves raising livestock and living to the fullest. She said lambs are her favorite animal, but she has also had pigs, goats and horses.
“What we want to convey to others is that it’s not just about survival, it’s about living,” West said.
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