Everett’s Story

My name is Morgan Stenvold and my husband’s name is David. We are from North Dakota. We had Everett in July of 2020. Around 11 months old we started noticing Everett had very uncoordinated falls and had trouble learning to walk. He didn’t start walking until he was 18 months old.  He is now 3, and still has trouble keeping pace with peers.  He must work hard to learn to jump, run and walk around obstacles. Everett’s speech was also delayed, and he didn’t start talking with intelligibility until around 3 years old.

After many months and many doctors/specialist visits, Everett was diagnosed with PKAN five days before his 2nd birthday. We were, and still are, devastated about this diagnosis and how hard life is for Everett. Despite his diagnosis, he works very hard at physical therapy, occupational therapy, and speech therapy several times a week. We are hopeful for any potential treatments and upcoming trails, giving Everett a second chance at life.