Kylie's eyes: Community lends love, support to young cancer patient

On June 5, the Morning News introduced its readers to 16-month-old Kylie Porchea, a local child undergoing treatments for a rare form of eye cancer called retinoblastoma. Despite the efforts of many people, we reported that treatment had been delayed as Kylie’s Medicaid insurance would not transfer for out-of-state treatment at the Wills Eye Clinic in Pennsylvania.

Since then, however, Jeff Stensland, public information officer for the U.S. Department of Health and Human Services, spoke with the Morning News to clarify some points and to provide an update on Kylie’s case.

“From the very start our staff had worked very hard,” he said. “It turned out to be an unusual case.”

Stensland said the main problem with the reimbursement for Kylie’s care at the clinic was not that her insurance would not transfer to that state, but rather that the clinic would not accept it.

“We were able to secure an agreement where we would cover all treatments rendered after June 6,” he said.

It is good news, although Kylie’s parents, Shannon Seymore and Vern Porchea, still will be responsible for their child’s medical care expenses prior to that date.

“We typically work out from the Medicaid rate,” Stensland said. “We had to work very hard to come to an agreement with (the clinic),” he said. “Along with our staff, there were lawmakers who were interested in this case who wanted to help out anyway they could.”

Stensland said that, among the lawmakers who helped push Kylie’s case to the forefront, were U.S. Rep. Jim Clyburn, S.C. Rep. Kris Crawford and several people from Gov. Mark Sanford’s office.

“The first time I had heard about this case was from the governor’s office,” he said. “They had heard about this case involving a little girl, and they wanted to make sure her Medicaid was taken care of.”

Stensland said Sanford’s office followed up to make sure everything possible was being done to help save Kylie’s eyes.

“There were a lot of folks that were concerned,” he said.

Kylie’s mother, however, said she thinks Medicaid should have paid from the beginning of Kylie’s treatments at the Wills Eye Clinic, rather than only for treatments after June 6.

“They’re going to pay,” Shannon said. “But with any other normal human being who applies to Medicaid, they back pay up to three months. With Kylie, they didn’t, so we still have $5,000 to $6,000 in bills to be paid.”

Shannon said she thinks it is unfair for Medicaid not to back pay for all the visits, but she does plan to continue taking Kylie to the clinic for treatment since she says it seems to help.

“We were up there last week and they did an eye exam and only found one new (cancer) seed in her eye,” she said. “They did the cryotherapy on it.”

Shannon said that because Kylie already had a recurrence of the cancer, she is at higher risk for another recurrence. Kylie’s next appointment is at the beginning of September.

“We hope they won’t find anything new, but if they do, they will definitely do the radiation again,” she said.

Kylie’s spirits have not been diminished by the constant activity surrounding her, though.

“She was a trouper, her eye was a little bit swollen,” her mother said.

Shannon said that, since the first article about Kylie’s condition ran in the Morning News, she has seen an outpouring of concern from the community, especially at a chicken bog fundraiser that was held at the Townhouse Restaurant in Florence.

“It was really good,” she said. “We had a lot of people who saw the article in the paper and stopped.”

She said several people only purchased one meal, but they wrote checks to donate to Kylie’s care.

Shannon said the experience has moved her to want to help another family in a situation similar to her own.

In the meantime, Shannon, Vern, their family and friends will continue to raise money for Kylie’s care.

And make new friends.

“I was out at Taco Bell one night and I got a call from this lady who said she was a retinoblastoma survivor,” said Shannon, who added that it has been comforting to be able to talk to someone who understands what Kylie is going through.

“The way she (the woman) carries herself — it’s like nothing in the world can bring her down,” Shannon said. “She’s just the sweetest lady in the world. She has two kids, and neither one of them was affected. So there is a lot of hope.”