SIOUX FALLS, S.D. (KELO) — May is neurofibromitosis or NF awareness month.
In 2018 Naomi Cuka had the falls lit up blue in her efforts to spread awareness about the disease, and this year she’s doing even more.
When meeting Westin Cuka you’ll quickly notice how energetic and playful the 5-year-old is.
What you won’t notice though, is that he is living with a genetic disorder causing tumors to form on his nerve tissue.
“NF is short for nuerofibromitosis and it affects 1 in 3,000 births and it causes tumors to grow on nerves throughout the body so pretty much anywhere… and it can cause blindness, deafness, bone abnormalities and sometimes even cancer,” Naomi Cuka said.
Naomi, Westin’s mom says their journey with the disorder began when her son started developing what looked like birth marks on his body.
She later learned that was a sign of the disorder.
“I was really shocked and surprised and a little bit scared,” Naomi said.
Shortly after her son’s diagnosis she turned that fear into hope.
“I have this itch in my body just to spread awareness and hopefully someday we are going to find that cure for NF so Westin you know can have a cure and my future grand babies that might possibly have NF there will be a cure for them, and anyone affected by NF,” Naomi said.
The two are even raising awareness through matching t-shirts with the colors blue and green on them, symbolizing Children’s Tumor Foundation.
Naomi has made it her mission to spread awareness in hopes of finding a cure and this year will have 6 businesses joining in her efforts.
With one of them being Falls Park for the second year in a row, which will be lit up blue on May 18.
“It means so much to me and it warms my heart and makes me seriously truly happy that we are going to be making a difference hopefully in the NF community,” Naomi said.
And she’s not stopping there. The family would like to host an NF walk in South Dakota in the future.
For a list of all the locations showing support for NF, click here.