SIOUX FALLS, S.D. (Dakota News Now) - The annual South Dakota Shine a Light Walk drew a crowd at Sertoma Park in Sioux Falls on Saturday, all in an effort to raise funds for the Children's Tumor Foundation and push to end NF, a group of genetic conditions.
There are superheroes among us, winning battles that most of us can't see.
Neurofibromatosis causes tumors to grow on nerves and around the body. It's normally benign, but it can cause pain for those who live with it.
The battles rage on, but the Shine a Light Walk showed strength in numbers. Naomi Cuka started the walk in Sioux Falls to help those like her son, Westin, to know that they're not alone.
Westin was officially diagnosed when he was three years old, but was showing symptoms when he was twelve months old.
"Having everyone here is a huge accomplishment and it's so nice to have a community to rely on. Some of the older patients with NF didn't realize that other people had it and so it's nice to know that our kids will not be alone as they fight on this journey," Cuka said.
"It shows me how much she cares about me and other people. My mom is trying everything to help me and other people with NF," Westin said.
Crystal Hessaa has lived with NF all her life, experiencing vision problems, a learning disability, higher blood pressure and a few bumps.
Three of her kids also have NF. Growing up, she said, there was no treatment. Days like Saturday are encouraging to her to see how far research has come.
"Now they're monitoring, they're doing more testing to where we can actually be more manageable and live with it more instead of being in pain and not knowing what's going to happen," Hessaa said.
Her daughter, Brooklyn, is one of her kids who does not have NF. Finding herself at numerous doctors' appointments has given her perspective and admiration for the heroes in her life.
"I don't really go through everything that they go through with the bumps, the Café au lait spots, the symptoms that you can have with it. I'm very proud [of my mom and siblings,]" Brooklyn said.
The money raised will support research to find a cure. The fight isn't over, but they march on and some brave patients just might turn the tide.
"I think it's huge for all the little kids, the fighters, non-fighters to show support. NF is a journey, it's a rollercoaster and they are little superheroes," Cuka said.