BURNET — From food to laughs and even a few tears, people reached out March 7 to help an infant suffering from a rare and incurable genetic disorder.
Angela Smith of HIS Work in Us Ministry, which helped organize the fundraiser, said an estimated 450 people packed the Simmons Building for Kiptyn Green. The 6-month-old boy has Langer-Giedion syndrome, a rare genetic disorder that causes non-cancerous bone tumors.
“It was very emotional and everyone was streaming with tears,” Smith said. “We had a wonderful turnout.”
IN PHOTO: Angela Smith sings ‘Lord I Give You My Heart’ as Tiffany Green uses sign language during a fundraiser March 7 for Green’s 6-month-old son Kiptyn Green. The infant has a rare genetic disorder called Langer-Giedion syndrome. HIS Works Ministry helped organize the event, which included two Christian comedians, a silent auction and a meal. Organizers said about 450 people turned out. Courtesy photo
Kiptyn underwent surgery for a cleft lip March 9, but Smith said he is doing well.
“He will face many surgeries in the future,” she added.
The infant was born born Sept. 21, 2009, to Ron and Tiffany Green of Burnet.
They soon learned he had Langer-Giedion syndrome. The disease is so rare researchers aren’t sure how frequently it occurs.
Though there is no cure, patients can get help through genetic counseling, orthopedic surgery, physical therapy and development specialists, officials said.
To assist the family, HIS Works helped organize the March 7 event, which featured Christian comedians Frank Cheek and Brent Reed, a silent auction and a meal.
Kiptyn’s mother is learning American Sign Language and signed the song “Lord I Give You My Heart” as Smith sang.
To help the family or for more information on HIS Work in Us Ministry, call (512) 755-2994.
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