MORRILTON — There’s nothing that jumps out about Carrie Ryan, a junior at Sacred Heart High School in Morrilton. The petite 17-year-old rolls her eyes at her mother’s jokes, wears her school colors proudly as student manager of the basketball team and dreams that one day lugging her books around will gain her admission into college.
So last year when she was hospitalized to replace a shunt for hydrocephalus, her classmates at the small Catholic school were shocked to discover that Carrie had spent her entire life dealing with neurofibromatosis, a genetic condition that causes tumors to grow along various types of nerves.
It wasn’t just that her symptoms were milder than in other cases or that she was hiding anything; asked to describe life with the disease, Carrie just shrugs.
“(Living with the disease,) it’s not different than normal I guess,” she said. “School’s a little harder, a little tougher to deal with.”
Because NF causes tumors to grow on nerve cells, a number of body functions may be affected; it can cause blindness, deafness, painful disfigurements and even cancer. It’s also common, estimated to occur at one in every 3,000 births, making neurofibromatosis far more common than cystic fibrosis. Arguably the most famous case is that of Vinicio Riva, an Italian man with an extreme form of the disease. Photographs of Pope Francis in November embracing the man whose face is all but obscured by tumors made headlines all over the world.
Looking at that photo, it seems unthinkable that something so serious and widespread could be as frequently misunderstood, but within the medical community, its early telltale dark spots are frequently misidentified as freckles or birthmarks, delaying DNA diagnosis and treatment. Just ask Lesley and Connie Oslica, parishioners of St. Joseph Church in Conway, about their daughter Katie.
“When Katie was 4½, I took her to a pediatrician, and I said I read these brown spots can be signs of a neurological disorder and the doctor kind of blew me off,” Lesley Oslica said. “Actually, he made me feel really stupid. He said, ‘You read too much and you need to not worry about that, they’re just freckles.’ He did not even know what NF was.”
As a result, Katie struggled in kindergarten and was held back a year while her parents tried to figure out what could be the root of the problem. She was finally diagnosed with NF five years later and even more than a decade later, the edge comes into Lesley’s voice talking about it.
“I lost all those years of advocating for her — for her health, for her education, for awareness of this disease,” she said of her now-22-year-old daughter. “And that is what fueled the fire for us to do something in Arkansas.”
What has followed can only be termed an evangelistic crusade for other children in other families facing NF. Lesley worked with the neurologist treating Katie to start the Neurocutaneous Clinic at Arkansas Children’s Hospital in Little Rock specifically to see NF-affected kids and provide resources in support of their families.
Today she is president of the Arkansas chapter of the Children’s Tumor Foundation and is on the national board of the Children’s Tumor Foundation. At the state level, she has thrown herself into fundraising activities, including the annual Dancing With Our Stars, which last year raised more than $100,000. The Oslicas have organized benefit golf tournaments and bike rides to raise money.
As a competitive runner with 12 marathons under her belt, Lesley is dogged on the heels of fellow runners to join the NF Endurance Team that raises both funds and awareness at road races. In fact, at the Little Rock Marathon in March, she’s hoping to enlist enough runners to top $40,000 in donations.
The money enables the group to support providing trained medical personnel through the Neurocutaneous Clinic. A portion of funds also helps send young Arkansans with NF to summer camp, something of which both Katie and Carrie have been beneficiaries. In fact, the camp has helped Carrie keep her condition in perspective, aided by her parents, Annise and Jim Ryan, parishioners at St. Elizabeth Church in Oppelo, who have insisted on treating her the same as their other children, or anyone else for that matter.
“She probably doesn’t think it’s any different than normal because it’s normal for her. She’s never known any other way,” said Annise, who is bookkeeper for Sacred Heart School. “When we first went to the genetic clinic at Children’s Hospital (in Little Rock) one thing they really stressed to us then was treat her as a normal child. Don’t try to treat her any different and we’ve always done that.”
Carrie’s condition is nowhere near the severest cases, but she’s not completely free from the disease’s complications. Her hydrocephalus and some learning difficulties are challenges she has faced as byproducts of her condition. Still, her story is a positive example of the difference the Neurocunateous Clinic has made, supported by the Children’s Tumor Foundation.
But it’s not only such success stories that fuel Oslica. Also, there’s the commitment to never let a family go through this experience alone. She said while expertise in the state’s medical circles has improved, progress is still slow in coming.
“The things that we have heard from families coming through the clinic are just bizarre and how many doctors across the state still don’t know anything about it,” she said. “That’s what drives me. I never want another family to have to go through what we did.”
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