April 10, 2007 — Irish folk tunes filled the air Monday afternoon at Carambola Beach Resort’s sun-dappled bar terrace as residents of St. Croix raised several thousand dollars to help the family of 18-month-old Kissee Shania Richards pay for medical treatment.
Kissee suffers from infantile hemangioma, a condition that causes portions of her face, neck and chest to swell dramatically. Although it is not often life threatening, it is painful and disfiguring and can cause permanent damage to the child’s health.
Medicaid would most likely pay for the operation if it could be performed here, but that type of facial surgery is not performed in the territory. Kissee’s mother, Maria Camacho, and father, Sean Richards, have been scrambling to find a way to help their infant daughter’s medical condition while also taking care of Kissee and her three older siblings.
“They told me when the condition first appeared it could lead to blocked air passages and over time to heart defects,” said Camacho.
Thankfully that has not happened — so far. Instead, Kissee’s lower face and throat swell up painfully.
“When it’s hot during the day, her skin gets really red and irritated. You can see it’s frustrating her a lot. We put some Neosporin on her face and give her some Motrin, and there is not much more we can do to help,” said Camacho.
“You can imagine it’s kind of embarrassing for Kissee with the other kids, too,” said Richards. Money and insurance are not the only problems. Differing medical opinions on what to do are complicating the situation. Finding a surgeon has not been easy.
“Dr. Karen West at the University of Massachusetts in Worcester said she would perform the surgery, but not until Kissee reached the age of five. Before then the body is too young and it is more dangerous,” said Camacho. “There is a doctor in Puerto Rico, which would be good because it is close, but he needs $60,000 up front.”
The operation is very serious, too. One doctor told Camacho there is a 50 percent chance of survival.
Milder forms of hemangioma also are known to sometimes clear up on their own by about age five, so delay is the usual prescription unless it is a particularly severe case, like Kissee’s.
Monday’s fund-raiser was a case study of community media alerting residents of someone needing help and the community responding. First, an article Friday in the Avis newspaper highlighted Kissee’s plight. The story then caught the eye of talk-radio host Roger Morgan, who began taking pledges on his show and helped arrange Monday’s fund-raiser.
“The first two donations came from St. John and St. Thomas,” said Morgan. “It’s really been a territorywide thing, with people from all three islands pitching in.”
They do not have exact figures yet, but between the fundraiser and pledges made on air to the radio show, they have about $10,000 so far. If necessary, paying for the operation in cash would cost more than $60,000.
Spreading the word far and wide has yielded more than a pocketful of cash. Ellen and Tony Sanpere heard Morgan’s radio show and began making phone calls. The Sanperes live on a 53-foot sloop-rigged sailboat they moor at Salt River in the winter. For the past couple of years they have done volunteer work with the Carle Clinic Association, helping with a surgery clinic in Barcelona, Venezuela, that performs hundreds of free or low-cost facial surgeries over three days each summer. They then contacted Dr. Michael Goldwasser, a top surgeon with the Carle Foundation Hospital in Urbana, Ill.
“We took color pictures from every angle earlier and are sending them to him tonight so he can get a clearer diagnosis of the situation,” said Tony Sanpere.
Whether the surgery is necessary and whether it should be done soon or put off, all depend on the particular path, depth and severity of the hemangioma.
“Dr. Goldwasser said he could do the surgery, but when, where and how it would be financed are all still being worked out,” said Sanpere. “If we can get him to do the surgery here, we think insurance will pay for it. But the obstacle there is getting him privileges to work at the hospital. We’re still talking to people to see if that can work out.” The St. Croix Shriners Club is also contacting the Shriners Foundation Hospital to see if they are able to help.
If you want to help, you can donate to the Roger W. Morgan Foundation by calling (340) 773-5935. You can also call Kissee’s grandmother, Bernadette Richards-Dyer, at 713-9587 for more information.
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