A Helping Haley Chili Cook Off will be held Saturday from 1 to 4 p.m. at the Rainbow Road Club, on U.S. 340, south of Charles Town, W.Va. Contact Sharon Kidd at 304-725-3540 or by e-mail at firstname.lastname@example.org for more information.
A benefit motorcycle run is scheduled for July 11 at the Rainbow Road Club and starts at 1 p.m. The benefit run costs $10 per person. The event also will feature live music, drawings for prizes, an auction and a bake sale. A $5 donation at the door will be requested, though children age 10 and under may enter for free. Contact Ruth Graves at 665-1775 or Kidd for more information.
By Alex Bridges -- email@example.com
WINCHESTER -- Haley Chapman plays outside like many other 6-year-old children.
She even looks forward to starting first grade at Greenwood Mill Elementary School this fall.
What Haley doesn't show is that she suffers from an illness and, according to her family and doctors, needs a kidney transplant.
Haley fell ill Oct. 7, and the family and her doctors at first suspected the girl contracted a stomach virus.
"She just came home from school that Monday saying she didn't feel well, that her stomach was hurting," her grandmother, Ruth Graves, recalled.
Haley's condition worsened and the family took her to Winchester Medical Center. Four days later doctors transferred her to a pediatric facility at the University of Virginia hospital in Charlottesville, Haley's mother, Tracy Chapman, said.
Haley underwent two blood transfusions, Graves said.
Tests showed Haley had E. coli poisoning, and the bacteria caused her to develop hemolytic uremic syndrome -- a disease that destroys red blood cells.
"HUS was something we had never heard of, and you could even say it to the nurses and they'd be like 'what?'" Graves said. "It's very rare."
According to the National Institute of Diabetes and Digestive and Kidney Diseases, the syndrome is the most common cause of sudden, short-term, acute kidney failure in children. The institute website states that HUS can cause serious complications and can be life-threatening, but most children recover from the disease without permanent damage to their health.
"What that did was it attacked her kidneys while the E. coli was still in her body, but they say it usually doesn't attack until the E. coli leaves her body, but it all attacked her at one time," Graves explained.
After nearly a month in the hospital, Haley returned home where she lives with her parents and older brother at their grandmother's house.
With HUS, most kids come back 100 percent, Chapman said.
"It was in February when they did the labs and they had an ultrasound of her kidneys done, hoping that there was a blockage or something they could fix, and they actually found that the kidneys were starting to shrink."
Graves later explained that doctors were more concerned with Haley's kidney function than the E. coli exposure by the time the girl was admitted to intensive care. Chapman said doctors had to wait until the E. coli left her system to "clean up the mess."
The family never could pinpoint where Haley came in contact with the life-threatening bacteria.
But doctors have told Haley's family the girl's kidneys continue to shrink, thus requiring a transplant.
Haley becomes tired easily as a result of the disease, Chapman said.
"It's amazing what the kidneys affect," Chapman said. "We watch what she's eating, what she's drinking."
"She's on a lot of medications," Chapman added. "She's on high blood pressure medication to help preserve the kidneys."
The family also has to keep a close eye on Haley and, in the event she has a fever or starts feeling ill, they have to make sure she sees a doctor.
Haley missed some school, but was able to return to her afternoon kindergarten class after her stay in the hospital, Chapman said. Graves would take Haley to kindergarten after lunch so she wouldn't be in school as long.
"So they were really flexible with letting her come whenever she wanted to so she was only there for three hours or else," Graves said. "They've been amazing with how they've worked with her and the fundraisers they did for her, and her sister just graduated from Millbrook [High School] and they did fundraisers there."
Haley rarely talks about her illness and doesn't appear to remember much from her initial stay in the hospitals, Graves said.
The injections of medicine Haley receives have restored much of the energy she had before the illness.
"It's not like she lays around sick or anything," Chapman said.
"But if she does start feeling bad she won't tell you, but you can tell because she's real whiny and grumpy," Graves added.
Asked what she likes to do, Haley said "play," and whether she liked school, Haley shouted "awesome."
"I like doing everything -- eat tacos and ribs," Haley said after her grandmother asked her what she liked to do.
When asked about a time when she didn't feel well, Haley, while sitting in the family's living room replied, "closing down" and put her head in a blanket in her lap. Then she laughed.
Haley said only of her stay at U.Va. that the nurses and doctors were nice. She remembers playing with a white rabbit named Snowball.
But Haley did say she's happy.
A nurse comes each Thursday to draw blood and do other tasks related to Haley's treatment. Haley returns to the U.Va. hospital once a month, Graves said.
Haley has not been placed on the growing list of people in need of a kidney transplant. As her mother explained, Haley's kidney function is at 25 to 30 percent. Doctors will start looking for matches, preferably from within the family, when her kidney function drops to 20 to 25 percent, Chapman said.
Chapman works for the Bank of Clarke County in Berryville and Haley's father, Terry, at H.P. Hood in Winchester. While the couple have health insurance, the family faces mounting medical bills related to Haley's treatments. Graves held a yard sale at her home recently and raised $400, some of which they received in a collection jar.
Haley has a supportive family, Graves said, including her 10-year-old brother, Nicholas, and 18-year-old sister, Courtney. The recent Millbrook graduate has helped a lot, Graves said.
"I think it's affected everybody," Graves said. "It's heartbreaking to know what she's going through and what she'll have to go through the rest of her life, you know with the medicines and stuff, and to see her and know what she's been through, she's also been an inspiration, because I don't think most adults would be able to handle [the illness]."