Felicia & Jayla
11 and 10 years old neurofibromatosis type 1
Jayla and Felicia were both born with a genetic disorder called neurofibromatosis type 1, or NF1. Not only does the disorder cause tumors to grow on the nerves, but it also may cause heart problems, high blood pressure and developmental delays. A progressive disorder that occurs in about one in 3,000 to 4,000 Americans, NF1 is accompanied by a risk of optic pathway glioma, a tumor that occurs along the nerve that sends messages from the eye to the brain.
To monitor possible NF1 side effects, Frederick and his wife, Elnora, took their daughters for frequent checkups. During a routine appointment in June of 2008, an ophthalmologist jumped in surprise when she looked into Felicia’s eye.
“She pulled the machine away and just looked at me,” Elnora recalls. “She didn’t say anything at first. She just kind of breathed deeply.” Then the doctor uttered five ominous words: “I think I see something.”
The family immediately visited a neurosurgeon, who noticed a thickening on the optic nerve of Felicia’s sister, as well. The physician advised Frederick and Elnora to take both girls to St. Jude.
“My whole life changed in a split second,” Elnora recalls. “I thought, ‘Not one, but two? Are my children going to die? How much is this going to cost?’ In my mind, I was trying to figure out how much money we had in our bank accounts, because I knew that they would do MRIs and other expensive tests. We had insurance, but everyone knows that some things are not covered.” Concerned about finances and reeling with shock, the couple took their daughters to St. Jude. As soon as possible, the Lees inquired about the cost. They were astounded when they learned that they would not have to empty their bank accounts to pay for treatment.
“They told us to relax—that we would have no out-of-pocket medical expenses. It was really overwhelming,” Elnora says. “It took a heavy weight off so that we could concentrate on our children.”