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Marfan activist dies suddenly Wednesday
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Samantha DeLong, who survived a medically induced coma and surgery when her aorta dissected in June 2012, died suddenly Wednesday.

Samantha DeLong, a Gainesville advocate for Marfan Syndrome awareness, died suddenly Wednesday.

Delong, 24, began her mission of increasing awareness of the connective tissue disorder after the condition caused her aorta to dissect in June 2012. After waking from a life-saving surgery and a medical-induced coma, DeLong began learning and sharing all she could about the condition.

According to The Marfan Foundation, www.marfan.org, about 200,000 people have Marfan or a related connective tissue disorder in the United States. But nearly half of those do not know they have it or haven’t been diagnosed. The condition affects about 1 in 5,000 people regardless of gender, race or ethnicity. People with typical Marfan are often tall and lanky, with large hands and feet.

Samantha recently earned an associate’s degree from the University of North Georgia and was interested in pursuing a career to help people with mental illness.

Tanya DeLong, Samantha’s mother, said her daughter was excited about meeting other people with Marfan and hoped to help them learn more about the diagnosis.

Since her surgery, Samantha lived each day “to the fullest” and tried to show everyone she met they were important, Tanya DeLong said.

“Her biggest wish was that they could find something to help people with Marfans,” Tanya DeLong said. “That was her passion since her surgery. That was her passion.”

Funeral services are scheduled for 2 p.m. Jan. 15 at Little and Davenport Funeral Home, 355 Dawsonville Highway.

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