Aug. 17--WAPAKONETA -- Ali Wayman, a soon to be fifth-grader, just wants you to see her as a normal kid. Diagnosed four years ago at the age of 6 with systemic lupus, she was given only three years to live.
"She's like a walking miracle," said her mother, Cheryl Wayman, a physician assistant at Lincoln Family Practice.
Systemic lupus is an autoimmune disease where antibodies attack the healthy cells, tissues and internal organs. Currently Ali is on 13 different kinds of medications to help control the disease, as there is no cure.
"There hasn't been a new medicine for lupus in 51 years," Wayman said. "We need a huge stepping stone to make some kind of progress."
There are about 1.5 million people with lupus, and it is most commonly found in African American women ages 15 to 40. When Ali developed what they call a "butterfly rash" on her face at age 6 -- a rash that spreads across the nose onto both cheeks -- lupus was not something that immediately occurred to her mother. She didn't think her daughter could be that sick.
A trip to Cincinnati Children's Hospital though, confirmed what a local doctor had suspected. Ali had lupus.
For those that develop lupus at a young age, "there is a greater than 80 percent chance they won't make it past puberty," Wayman said
So far Ali has beaten her threeyear odds, but not without many struggles. Ali deals with muscle pain and swollen joints as well as kidney and lung problems. She has experienced blood clotting and Raynaud's, which is the loss of blood circulation to a person's extremities. It became so bad for Ali that her toes blistered.
The family has also kept blankets for Ali at school in the winter so she does not lose blood flow to her heart, which has happened a few times, Wayman said. Ali has also experienced migraines so bad that they caused stroke symptoms of vision loss and facial droop.
The medication has taken its toll also. Ali has not grown an inch in three years.
"My hands are the same size as when I was 4," she said.
"It's a constant emotional rollercoaster," her mother said. "But she's a positive kid that wouldn't let it get her down."
"I like dancing and playing basketball and playing with my brother outside," Ali said. She also loves swimming but can most often only do it at night since the sun is a key trigger to lupus, her mother explained.
But even with all the battles, the family remains very upbeat and positive. Wayman credits their faith, family and friends for their outlook on the future.
"We started a children's church at First United Methodist Church in Wapak, and we just have wonderful friends and family," she said.
Wayman spends a lot of her time trying to educate people about lupus and helping to get funds to do research.
"I'm trying to do everything that I can possibly do," she said.
This year Wayman is heading the Walk for Lupus from 8 to 10 a.m. Saturday at the Lima Mall. There will be raffles, door prizes and chair massages, as well as giveaways for lupus patients. Dr. Lin, an orthopedist, and Dr. Arabpour, a cardiologist, both at Lima Memorial Health System, will be present to answer any questions regarding lupus.
Wayman hopes they will have a good turnout this year.
"We want to raise money to have support in the local area," she said.
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