Everet Scott's Story....

Parents Justin Larock & Rachel Nordby, along with older sisters Aubrie, Lyla & Elaine, were ecstatic when they found out they were finally adding a little man to the family. Rachel was diagnosed with early gestational diabetes and at 39 weeks, Feb. 4, 2026 weighing 12lbs 11oz, 24'' long, Everet Scott was delivered. Upon arrival, the pediatrician recognized Everet had various features that later diagnosed him to have Beckwith-Weidemann Syndrome. Everet had macroglossia (a larger tongue along with low blood sugar). He was transported to NICU at Children's MN Hospital for 4 days. After his stay, he was eating and had stabilized his blood sugar levels. With the Beckwith-Weidemann Syndrome, he is at high risk for childhood cancer and will be screened every 3 months until he is 8 years of age, then yearly until he is 30. He will be closely monitored for tumor markers and abdominal muscle defects, along with hernias. This is an ongoing journey for Everet and his family with many unknowns ahead. Currently at 6 months old, Everet has continued doctor visits, discussing his first surgery to correct his macroglossia (larger tongue), planning on MRI where he is to be sedated to see an abnormality between the gallbladder and liver, and at 25lbs he is proving to be ready to Grow and Go!

Thank you for considering supporting our event and this beautiful young family in this time of need.