Fundraiser in southeast North Dakota planned for boy with rare neurological disorder
Heroes Unite will be a special fundraiser for Hoyt Saturday in Havana, North Dakota. The fundraiser includes a 5K run, lunch, silent auction, and a street dance.
HAVANA, N.D. — The small town of Havana will be hosting a fundraiser Saturday, July 10, to raise awareness about a rare childhood disease that is impacting a toddler named Hoyt Lambert.
One day, there is a good chance the adorable two-year-old will be part of medical history. His mom Bryn Lambert, who calls Havana home, is like any other proud mother, but when Hoyt was born, his parents noticed something.
"When he was five months old, we noticed he wasn't sitting up or rolling over," Bryn Lambert said.
Therapy and genetic testing led to a diagnosis of a neurological disorder known as KIF1A, or KAND. KAND impacts only 300 children worldwide and can affect vision and movement, as well as cause developmental delays.
"I never thought my son would have something that was something that is not curable," Bryn Lambert said. "That was a big turning point. (It was) hard to digest that news. I had not expected that. You always think, 'It won't happen to me,' but it did happen to me."
KAND is not only rare, it is a progressive illness, and it currently has no cure. Families like Hoyt's are using therapy and the support of other families around the world in the same situation.
The Lamberts hope to help their little boy and raise money and awareness so a cure can be found.
"He is determined; he doesn't know there is anything keeping him back," Bryn Lambert said. "He goes and goes and goes. If he crawls and falls, he goes again. He is like, 'Whatever, I fell. I will try this again.' He is so sweet and happy, I just love him so much."
Heroes Unite will be a special fundraiser for Hoyt Saturday in Havana. The fundraiser includes a 5K run, lunch, silent auction and street dance.
Donations for Heroes Unite can be made on the organizations Facebook page .