South Florida Girl Champions Marfan Syndrome Awareness Ahead of Walk for Victory

HOLLYWOOD, Fla. — Navigating childhood presents its own set of challenges, but for 12-year-old Haley Langford, living with Marfan syndrome adds an extra layer of complexity.

 

Despite this, Haley is determined to raise awareness about the condition and support others facing similar journeys.

 

Marfan syndrome is a genetic disorder affecting connective tissue, impacting various parts of the body, including the heart, eyes, and skeletal system.

 

Individuals with Marfan often exhibit tall stature, elongated limbs, and flexible joints.

 

Early diagnosis and comprehensive care are crucial to managing the condition effectively.

 

Dr. Roman Yusupov, head of the Marfan Clinic at Joe DiMaggio Children’s Hospital, emphasizes the importance of a multidisciplinary approach.

 

“It’s essential to have a team that understands Marfan syndrome and can provide holistic treatment,” he stated.

 

Haley, now a seventh grader, reflects on her experience: “Learning about my condition helped me realize I’m not alone and that I can lead a normal life.”

 

She takes daily medication to protect her heart and remains active in her community.

 

In support of the Marfan Foundation, the annual Walk for Victory is scheduled for Sunday, February 1, 2026, from noon to 3 p.m. at T.Y. Park in Hollywood.

 

The event aims to raise awareness and funds for research and support programs.

 

Local 10 News is participating, with a team walking to support the cause.

 

For those interested in joining or donating, visit the Local 10 team page.

 

Haley’s advocacy underscores the significance of community support and education in managing Marfan syndrome.

 

Her efforts inspire others to seek early diagnosis and embrace a proactive approach to their health.