Local mother creates fundraiser for a rare disease

Local News

SIOUX FALLS, S.D. (KELO) – A local Sioux Falls mother is starting an event to help children across South Dakota. N.F. is short for neurofibromatosis. It’s a rare condition that can develop in children at birth or early childhood. One local woman is hoping her upcoming event can help raise awareness and funds for treatment.

This little ball of energy is Westin Cuka.

6 Year Old Westin Cuka

From the looks of it, you wouldn’t be able to tell that he’s been living with Neurofibromatosis for 3 years.

“You could have tumors anywhere throughout the body on a nerve ending, and… it could lead to blindness, deafness, bone abnormalities,” Westin’s Mother Naomi Cuka said.

Neurofibromatosis or “N.F.” for short, is a rare condition that affects 1 in every 3,000 births. Kids are typically diagnosed when they’re born or somewhere during childhood. Westin received his diagnosis when he was 3.

“He has speech delay. He was also delayed in walking and… things like that. He has two small curves on his spine, and 50% of patients with NF have scoliosis,” Cuka said.

Westin doesn’t have any tumors, but his mother Naomi says that could change any day. Over the years, the family has participated in many walks to help raise funds for treatments.

The Cuka Family.

“We went down to Kansas City twice, then we’ve gone to Moorhead, Fargo area once. So we – it’s a big travel for us, so I’ve been rooting and hoping for a walk here that’s closer to home, Cuka said.

She’s been working closely with the Children’s Tumor Foundation to host South Dakota’s very first Walk for N.F. It was originally planned to happen earlier in June, but because of the coronavirus pandemic it’s now moved to October as a virtual event.

“We are going to get on the morning of October 3rd and do a little spiel and then we encourage everyone to go out even if it’s just around their house, or down to a local park, or on a bike path, something like that. Take pictures and then everybody who submits a picture in we’re going to make an awesome video and pay tribute this way,” Cuka said.

Fighting N.F. one step at a time.

While COVID-19 has made it hard for the Walk for N.F. to get its feet on the ground, it’s not stopping them from taking big strides toward their goal.

If you know anyone that has N.F. or has been impacted, or would like to register for the virtual walk, you can visit the Children’s Tumor Foundation website.

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