Columbus family copes with child’s genetic disorder

Cheyenne Batchelder, 5, romps happily in the yard of her rural Columbus yard with her younger brother and sister, Cherokee and Zackarry Spencer.
None of them think it’s unusual that Cheyenne scoots along on her hands and knees, or stands with the aid of a walker. The child, who has a genetic disorder called neurofibromatosis, has always moved this way.
That will change this summer when Cheyenne’s right leg is amputated and she is fitted with a prosthesis.
“I’ve explained that her bad leg will go bye-bye and she’ll get a brand new leg so she can run and play like her brother and sister,” said Tricia Spencer, her mother.
Cheyenne’s problem was evident at birth.
“When she was born, her right leg curved by about 40 degrees,” Spencer said. “I brought it up to her pediatrician, he did some tests and I was told that her right leg could break at any time because it was so paper thin.”
That happened when Cheyenne was about four months old.
“She had found her own toes, was playing with them and broke her leg in the middle of the night,” Spencer said.
She rushed the child to St. John’s Regional Medical Center, and found that she was suspected of abusing her baby.
“They wouldn’t let me pick her up, and there was a guard there the whole time,” Spencer said. “I understand their procedures to protect children, but I told them that Cheyenne’s problem was in her medical record, and they wouldn’t look it up.”
Cheyenne eventually underwent corrective surgery at Children’s Mercy Hospital, Kansas City.
“She’s had two bone grafts, a rod placement and a rod replacement,” Spencer said. “The rod goes all the way down below her ankle, and she has no range of motion in her right leg. She can turn her entire leg around so that her foot is backward. It makes people sick to see it, but it doesn’t seem to bother her.”
Finally the doctors gave Spencer two options.
“One is to take a chunk of bone from her left leg and put it in her right leg,” she said.
That might not be successful — and Cheyenne’s good leg might have problems afterward.
“The other option is amputation,” Spencer said. “I hated making that decision — I don’t want her to resent me later.”
Surgery will be done in St. Louis this summer, so Cheyenne won’t have to miss school.
“She’ll be in a wheelchair a minimum of six weeks after surgery,” Spencer said. “I think it will be longer because it takes her four or five times longer to heal than most people.”
A wheelchair ramp is needed at the family’s trailer home.
“There is an old ramp in back, but it’s in bad shape,” said Cheyenne’s stepfather. “It would take at least 10 truckloads of rock, plus gravel, to make a circle drive around for the ramp, and we can’t afford that. What we need is an extension of the porch.”
Fundraising activities have been planned to help cover expenses.
“We’ve already had one poker run, and we really thank the people who came out,” Spencer said. “There’s an account for Cheyenne with Southwest Missouri Bank, and donations can be left at any of those bank locations. We’ve been working with SKIL, and Maryanne Rocks at KSEK 99.1 has been helping organize a benefit concert.”
Christopher Dee of Four State Shows said that the concert will be held Saturday at Foxtown City Limits, Mulberry.
“Doors will open at 7 p.m., and we’ll have five bands — Cooper’s Wish List, Pretty Empire, Question Mark, Jomo Mojo and the duo of William and Cory Smith,” Dee said. “Admission is just $5.”
“Maryanne Rocks is also going to have a party from 1 to 3 p.m. Saturday in the Meadowbrook Mall parking lot, and Cheyenne will be there,” Spencer said. “All of this has given her an opportunity to meet new people, and she’s really having a blast.”
The little girl has fun most of the time.
“Cheyenne doesn’t let any of this get her down,” Spencer said. “I really praise parents who have to deal with more than I do — all the heartache and stress. Some nights I cry myself to sleep, and some nights I don’t sleep at all. Every parent wants their child to grow up and have a happy life.”