INDIANAPOLIS — On Saturday, 14-year-old Amari Turner, staff from Riley Hospital for Children and the community will walk to raise awareness about a little known condition with a big impact.
Neurofibromitosis, or NF is a collection of three genetic disorders that cause tumors to develop along the nerves and brain.
"If you put all the patients with Cystic Fibrosis, Muscular Dystrophy and Huntington's Disease together, there are actually more patients affected with N F, than with all those other diseases combined." Explains Dr. Steven Rhodes, an Assistant Professor of Pediatric Hematology and Oncology at Riley Children's Health.
"It's been stressful, hard, I'm tired a lot," Turner said.
When Turner was little, her parents noticed there were some delays and several spots they thought were birthmarks but turned out to be cafe au lait spots, which are common for children with NF.
There is currently no cure, but in 2020 the Food and Drug Administration approved a new medication to treat NF. It helps stop tumors from growing and can shrink them while improving overall symptoms.
Turner has a team of experts at working to keep them healthy.
"We actually have a multidisciplinary, NF program that sees both pediatric and adult patients." Explains Dr. Rhodes. "We have multiple sub-specialties involved. So really, it's a team effort of all of these individuals, and some specialists working together to provide really comprehensive care."
"Appointment days are long. We traditionally see her team here at Riley, every three months. On those days, we'll see her neurologist, her oncologist. We have an advocate for her for school. We'll see her nurse and then other doctors that are instrumental in the research for NF," Turner's mom Alicia Turner said.
The walk is taking place at Locust Grove inside White River State Park from 10 a.m. - 1 p.m. To register or donate, click here.
-
IPS encourages student and family input during Community Conversations
A series of Community Conversations is happening this month, as a way for the public to share input on the future of education in our city.
IMPD prayer vigil to uplift and support those who protect and serve
Monday night, WRTV’s Amber Grigley was there as faith leaders joined IMPD and neighbors at Amazing Grace Christian Church to uplift and support those who protect and serve.
Man critically injured in shooting on the northeast side of Indianapolis
A man is reported to be in critical condition following a shooting on the northeast side of Indianapolis on Monday night.
Historic Boone County church to be renovated as community center by local couple
The church has stood in downtown Lebanon since the early 1900s. The Tranums bought the property about three years ago, saying it needed extensive work.
