“I was terrified at the word tumors…”

Westin is now an 8 year old boy that enjoys Legos and building and off to 3rd grade this year. But at the age of 12 months, Westin had a strange mark appear on his stomach. Over the following few months, he began to have more and more spots appear. Although they were unaware at the time, they were in fact cafe au lait spots (flat, light brown spots on the skin).

Westin also had some developmental delays such as crawling and walking. He also didn’t start to talk until much later than his peers. During the course of Westin’s first three years, these delays and symptoms led them to genetic testing and a confirmed diagnosis of Neurofibromatosis (NF).

Neurofibromatosis is a genetic disorder that causes tumors to form on nerve tissue. These tumors can develop anywhere in the nervous system, including the brain, spinal cord and nerves. 

Westin’s mom said, “When he was diagnosed, I was terrified at the word tumors… I felt so overwhelmed and alone. I didn’t even know how to tell my family…. So I didn’t for a few months.”

Currently, there is no cure for NF; however in 2020 a FDA drug was approved. Even with advancements in treatment options, where is still a lack of awareness when it comes to this disorder. 

May is  NF Awareness month where monuments are lit up blue and green to bring NF out of the shadows. In addition, if you are in the Sioux Falls area; you can take part of the Shine a Light on NF walk on September 24, 2022. The Shine a Light NF Walk is a fundraising event to benefit the Children's Tumor Foundation and help end NF. Neurofibromatosis, or NF, affects millions of people worldwide, but few have heard of it and there currently is no cure. The Shine a Light NF Walk brings NF out of the shadows, raising awareness and funding research to help better the lives of those living with NF. 

Naomi shared, “I don’t want anyone else to be diagnosed with NF to feel alone and that’s why I am so passionate about building a NF community here in South Dakota. We can be a resource, a shoulder to cry on,  and we can be here to help answer questions. Living with NF can take you on a rollercoaster, just take it one day at a time and just know that you are never alone is what I would tell parents of kids diagnosed with NF.”

Click here to learn more about NF. 

Find all the details on the Shine a Light on NF walk here.