BOCA RATON, Fla. – From the start of her young life, 6-year-old Haley Langford has faced challenges.
“She was born three weeks early and she was in the NICU for six days, underweight,” her father, Garrett Langford, told Local 10 News.
For the next few years, Langford and his wife, Amanda, took Haley to dozens of specialists in an effort to figure out why she was growing but not putting on weight.
In the fall of 2018, genetic testing revealed Haley had Marfan Syndrome.
“It was the first time we had heard of Marfan Syndrome so we didn’t know anything about it,” Langford said.
It’s estimated that one in 5,000 people are living with Marfan Syndrome, but many don’t even know it.
“Marfan Syndrome is a connective tissue disorder, and by connective tissue I mean it affects your skin, your joints, your heart and the vessels around the heart,” said Dr. Roman Yusupov, director of the Craniofacial program at Joe DiMaggio Children’s Hospital and an expert in Marfan Syndrome.
Once Haley was diagnosed, Langford realized he and his wife hadn’t picked up on some of the external warning signs.
“We noticed she has longer limbs, long legs, long fingers and flat feet, which are some of the signs that you can notice,” Langford said.
But Yusupov said the biggest concern is how Marfan Syndrome impacts the heart.
“In these patients you have enlargement of the aorta. You may not feel it, not even know you have it, but as it enlarges, it may rupture and you die,” Yusupov said.
The Langfords are counting their blessings that Haley was diagnosed early so they could take steps to protect her heart and her health.
“She’s thriving in school, she’s got lots of friends, her classmates and her teacher just love her and we’re so proud of her,” Langford said.
The annual South Florida Walk For Victory, which raises awareness and funding for research on Marfan Syndrome, will be held Sunday, Feb. 9.
For details on how to participate, visit https://give.marfan.org/event/2020-south-florida-walk-for-victory/e245483.