Molly's Kids: Putting a face to Klippel-Feil Syndrome - | WBTV Charlotte

Molly's Kids: Putting a face to Klippel-Feil Syndrome

(Photo courtesy family) (Photo courtesy family)
(Photo courtesy family) (Photo courtesy family)
(Photo courtesy family) (Photo courtesy family)

LENOIR, NC (Kelcey McClung and Molly Grantham/WBTV) - August 6 is Klippel-Feil Syndrome Awareness Day, and Deanna Lawson wants you to be aware.

Known as “Dee,” this Lenoir girl will be in the 3rd grade this year. She suffers from KFS, and as a result has been fighting medical battles her entire life.

KFS is a rare skeletal disorder that affects the spine, major organs, muscles, vision and hearing. It can cause severe chronic pain; both in the body from affected muscles and bones, and headaches as a result of the fusion of cervical vertebrae- spinal neck bones. Two or more fused vertebrae are present at birth for those who have KFS.

Dee was born with KFS to a homeless, meth-addicted woman. She was missing a kidney, had no reproductive organs and only part of her intestines. In the first four months of her life, she had two major heart surgeries and four eye surgeries.

The fight continued from there. As she got older, the severity of her condition increased. Her back and chest still cause her pain everyday. 

“As she grows, KFS pulls her muscles and bones in ways that they weren't meant to,” Janey Porter, Dee’s adoptive mother, said. “As the pain worsens, so does her vision. She may have to undergo surgery to correct her right eye; this would make her 5th surgery on just her eyes alone.”

Dee, however, does not let any of this keep her down.

Janey describes her as a funny, loving girl who enjoys swimming. Dee was in the Special Olympics for Gamewell Elementary School and even swam on the Special Olympics team for the Burke Stingrays.

Klippel-Feil Syndrome Awareness Day occurs every year. Parents like Dee’s spread the word about the disorder in the hopes it will generate more attention and funding for research.

“Mark your calendars for August 6th!” Janey said. “It might not mean much to you all but it means a ton to those of us in the KFS community.”


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