Hundreds come out to raise funds for Marfan syndrome

Rare genetic disorder is life-threatening condition


HOLLYWOOD, Fla. – Hundreds packed Topeekeegee Yugnee Park in Hollywood Sunday for the second annual “Walk for Victory” organized by the Marfan Foundation.

Walkers, including our own local 10 team, came out to raise awareness and funding for the syndrome, which affects one in 5,000 people.

"We are trying to bring these local programs here to South Florida so that people that need help that are living with Marfan they have a place here to go for help for treatment," Local 10 traffic reporter Nicole Perez said.

Local 10’s President and General Manager Bert Medina was diagnosed with Marfan syndrome in his 20s. Years later, the Marfan Foundation came to his aid when he needed help the most.

"I didn't truly discover the Marfan Foundation until 2012 when I needed to have life-saving open-heart surgery. At that point, the information the Marfan Foundation provided for us was life-saving," he said. 

The genetic disorder is life-threatening and affects the connective tissues of the body, which can lead to serious complications. Nearly half of the people who have this condition don’t even know it.

Former Miami Dolphin Kendall Langford and his wife Cristin never heard about Marfan syndrome until their third child, Kamden, was born.

"[It’s] probably the toughest thing both of us have been through," Langford said. 

Doctors noticed a heart murmur and he was diagnosed with neonatal Marfan. Kamden died only seven weeks after his birth.

"The most devastating thing I’ve ever encountered in my life and I pray that I don’t have to bury another child," Langford said. 

The Langfords and so many at the walk shared their personal stories in order to bring hope and awareness into peoples’ lives.

"At the end of the day, saving lives is what this walk is all about," Medina said.

The Langfords raised more than $8,000 for the foundation. 

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