My nephew, Everett, was born on July 3rd, 2020 seemingly healthy. He met all of his early milestones: he rolled over, sat up and crawled on time. He was a strong and happy baby. Before he was a year old, his parents noticed he was struggling with balance and coordination issues so with the advice of his pediatrician he began physical therapy in November 2021. That began an 8-month stretch of many visits to several doctors in search of answers.

 

Since then, they have seen ophthalmologists, neurologists, ENTs, audiologists, pediatric balance/coordination specialists and genetic counselors. They have had numerous appointments a week for nearly a year and counting. This includes multiple trips to the Twin Cities in search of quicker answers. Throughout the last year Everett has endured several MRIs, EEGs, X-rays, blood samples, urine samples, physicals, and countless hours at dozens of doctors' offices.

 

After almost a year of looking for an answer their lives changed forever on June 22nd when they received a phone call no parent should ever have to. Everett had been officially diagnosed with Classic PKAN, an extremely rare, progressive genetic disease involving degeneration of the nervous system and build-up of iron in the brain. At this time there are no treatments or cures available to slow the progression of this disease. 

 

Everett is a tough little guy. On top of doctor appointments he currently receives four therapies every single week. Everett will need to continue physical therapy, occupational therapy, speech therapy and vision therapy to ensure the best quality of life possible. His mom, Morgan, has left her full-time position as an elementary school teacher to care for Everett and to be able to provide support during his therapy sessions.

In the future they are hoping for an opportunity to get Everett into a clinical trial to fight this disease. I am setting up this fund as a way to ease the financial burden of medical expenses, therapies, and the medical equipment Everett will eventually need along with giving him the absolute best life possible.