NEW PORT RICHEY
Walking hand in hand with friends and sporting a pair of sunglasses, 3-year-old Riley Jeanne Brown was all smiles Thursday at the SJS Walk for Riley at the Genesis School. Children, teachers and parents raised more than $3,000 at the event to help Riley in her fight against Stevens Johnson syndrome, a rare and sometimes fatal autoimmune disease causing skin to burn from inside, blister and shed.
Riley most likely acquired the illness as a reaction to children's Motrin and was treated at All Children's Hospital, where she received intravenous treatment, multiple surgeries and a blood transfusion.
The expense of that lifesaving treatment was an afterthought to Riley's parents, Paul and Kristen Brown. But the out-of-pocket costs have mounted all the same, even though the family has insurance.
"As far as what we could cover out of pocket, we were probably maxed out on day two, but all we care about is our daughter's health," Kristen Brown said. "Now that the bills are coming in, we have been amazed by the support of people in the community. What Genesis School is doing for us, we couldn't be more grateful."
According to the Stevens Johnson Syndrome Foundation, the disease can affect anyone, but is most devastating for children. It is brought on after infection or as a drug reaction. The first signs are flu-like symptoms followed by a rash.
After Riley broke her clavicle playing, a doctor prescribed Motrin to ease the pain. When she developed flu-like symptoms, the doctor prescribed more Motrin in combination with Tylenol.
Riley quickly got worse.
"I called the doctor and they said not to bring her in, that it was normal for the flu," Kristen Brown said. "I should have listened to my motherly instinct, because the next morning when I woke up she was covered in blisters so bad her eyes were swollen shut."
Riley spent 16 days in the intensive care unit at All Children's before being moved to the regular floor, where she remained for 10 days. She was treated by a team of 14 doctors, including plastic surgeon Michael Gallant and ophthalmologist David Mendelblatt.
Mendelblatt said because SJS is so rare — affecting 6 out of every 1 million people — it is difficult to pinpoint a specific drug as the cause. For this reason, the Food and Drug Administration has yet to list SJS as a possible side effect to Motrin. Still, doctors see a connection that's hard to deny.
"I'm very suspicious of Motrin in Riley's situation," Mendelblatt said.
While the scarring on Riley's skin is healing well, the scar tissue in and around her eyes remains a threat to her vision. Riley is still extremely sensitive to light, so much so that a sheet now covers the family television. The Browns are working with Mendelblatt to determine possible treatment options, which will likely mean more surgery.
"At this point the prognosis is uncertain," Mendelblatt said. "We have to see how she progresses and what procedures she will need. I will do anything I can to help this girl. She is really a fighter."
For now, the Brown family home is kept dark with curtains and sheets to cover the windows. Riley receives eyedrops regularly and keeps her sunglasses close by. She wears long-sleeve shirts, pants and hats outside during the day to keep her skin safe.
She was covered from head to toe at Thursday's fundraiser at her preschool, but didn't seem to mind the heat. She walked with her classmates around a track set up by volunteers. She danced as pop music blared.
Walk participants wore shirts designed by Kim Michaelson, a cafeteria worker at Ridgewood High School, where Kristen Brown teaches English. Proceeds from the shirt sales all went to the Brown family. There was also a bake sale. Publix donated doughnuts.
Riley's teacher, Carla Barr, organized the event.
"The stress of a child being sick is enough, and then to add on the medical bills, we knew we had to do something," Barr said. "A walk seemed like a good way to bring everyone together. When we organized the event, we didn't know if Riley would be able to come, but she's here. That makes it a celebration."
Riley's grandparents, Phillip and Rose Lucarell, attended the walk. They were excited to see their granddaughter spending time with other children, laughing and playing. For Rose, who spent hours by Riley's hospital bedside, it was an emotional moment.
"Riley is just so strong," she said. "The other day she told me when she grows up she wants to be a doctor so that she can help kids and they won't ever be sick like she was. I know her strength helped her survive."
Brown told friends she can't wait until the day her daughter is fully recovered and back at school to stay. She said she will continue to seek the best medical treatment possible, no matter the cost.
"My main focus is making sure my daughter is healthy and that she comes out of this whole thing as unscathed as possible," Brown said. "Riley has always been a happy, smiling child, just this ball of energy and a huge light. I know this experience may have dimmed that light a bit but I won't let it put it out."
This article has been revised to reflect the following correction: Dr. David Mendelblatt is the ophthalmologist treating Riley Jeanne Brown, the 3-year-old with Stevens Johnson Syndrome. An earlier version of this story gave an incorrect name for the doctor.