May 11, 2013 7:00 PM
BOWLING GREEN, Ky. (AP) - At first glance, Ginny Gipson looks like a typical teenager. The 17-year-old Bowling Green girl wears youthful trendy clothes, a little makeup and accessories and keeps her cellphone close.
However, a war rages inside Ginny.
At any moment she could have a nosebleed so bad it could kill her. She bruises so easily that concerned citizens, fearing she had been abused, have called the police.
"We will take it every time to save a child from being abused," said Lisa Moore Vaughn, Ginny's mother.
Ginny isn't an abuse victim. She has an autoimmune disorder and MYH9-related disorder. Ginny has problems with her kidneys, liver, eyesight and hearing. She wears contact lenses in her eyes and a hearing aid in each ear.
"Her own immune system is one of the problems," Vaughn said. "Her body goes to kill the platelets."
The Genetics Home Reference, a service to the U.S. National Library of Medicine, said MYH9-related disorder can have many symptoms, including bleeding problems, hearing loss, kidney disease and cataracts. People with the disorder have a reduced level of circulating platelets, which are cell fragments that normally assist with blood clotting. The platelets are larger than normal, making it difficult for them to move into tiny blood vessels. This impairs clotting. While the incidence of MYH9-related disorder is unknown, more than 200 affected families have been reported in the scientific literature.
"There are one in a million people who have it," Vaughn said. "She really is one in a million."
Vaughn prays a bone marrow transplant will help Ginny.
"It's not going to undo the damage that has been done, but we're hoping it will stop any more damage," she said.
She and Ginny's father, Troye Gipson, are only a 50 percent match, so they are organizing a bone marrow drive to be held later this month or in early June at Greenwood Park Church of Christ. People can also be donors for the National Marrow Donor Program. For more information, visit bethematch.org.
"We spoke to transplant team on April 17," Ginny said. "They want to try to do (the transplant) in August."
Vaughn learned Ginny was sick when she took her to her first-year checkup.
"Her platelets were so low they thought she had leukemia," she said. "She spent her first birthday at Vanderbilt" University Medical Center in Nashville.
Until she was 13 years old, doctors called her condition idiopathic thrombocytopenic purpura, also known as ITP, a disorder characterized by excessive bruising and bleeding caused by unusually low levels of platelets. In 2009, she had a severe aneurysm.
"It was my worst nightmare come true. I could tell she was having an aneurysm," Vaughn said. "She couldn't finish a sentence or thought. God laid his hands on her. When your platelets are low, you bleed. She had multiple brain bleeds in 2009."
Ginny has endured a lot of procedures to heal her body, but nothing has been able to completely stop the bleeding.
"Every medicine we've used just one time, but we can't use it again" because it doesn't work a second time, Gipson said.
Seven days before the transplant, Ginny will have chemotherapy and radiation. After the transplant, she will be in the hospital for four to six weeks before transferring to the Ronald McDonald House.
"Afterwards, I can't be so far away from Vanderbilt," she said. "I can't even risk being around someone with the sniffles because it can kill me. Even when I go home, I can't go to the movies. I can't go to the grocery store."
The early days recovering at home will be hard for Ginny, Vaughn said.
"She's a people person. Socializing is a part of her," she said. "Even after the brain bleed, her friends came to see her."
Still, Ginny prefers to be as positive about her situation as possible.
"I've had it my whole life. I don't know any different," she said. "If you're negative, it's so much worse. Anything and everything I can do to feel normal, I do."
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