Days away from potential life-saving surgery for her son, Lillian Sherman and family still aren't sure how it's to be paid for.
Sherman and nine-year-old Robert Griggs are scheduled to fly to Boston next week, where they'll drive to Cincinnati's Children's Hospital June 18.
"With or without insurance, he needs this done if we have to go into debt for the rest of our lives," Sherman said Monday.
Sherman's health insurer has balked at coverage associated with Griggs' needed bone marrow transplant, which health experts say is the only long-term cure for Fanconi Anemia.
"They have at least agreed to pay matching costs for the testing," said Sherman, noting a procedure to determine whether Griggs' sister, Kimberly, can donate bone marrow to her brother.
The results had not come back as of Tuesday.
If the marrow isn't matched, Sherman said options would be explored through a national donor list.
While the waiting continues, Sherman and her son's supporters are assessing profits from a Memorial Day weekend fund-raising drive. Items donated by area businesses were raffled off at $5-per ticket at both City Market and Safeway.
The effort raised $1,078 for Griggs' cause.
"I was afraid we were going to run out of raffle tickets," Sherman said. "The community was just absolutely giving."
The fund-raiser was hastily planned just weeks after Griggs fainted in school April 28. He was soon diagnosed with the rare anemia, which destroys bone marrow and leaves victims unable to produce new blood.
Worldwide, one to five people per million are afflicted, according to Suzanne Lauck, family support coordinator with the Oregon-based Fanconi Anemia Research Fund.
Cincinnati's Children's Hospital is among the few facilities performing the transplants for Fanconi Anemia patients, she said.
Lauck said recent low success rates with the procedure could explain insurers' hesitance to cover costs. Transplants in Fanconi patients were successful in just 10 percent of cases five years ago, she said.
Lauck added that costs are also a factor, while bills in Griggs' case could approach $325,000.
She said success rates today stand at 85 percent with improved techniques.
"Many didn't understand this disease and didn't know what needed to be done in terms of pre-operative care."
Paul Shockley can be reached at 824-7031 or at firstname.lastname@example.org.