Easton Friedel tackles kindergarten with a rare disease and a great attitude

Easton, it seems, has a knack for taking charge.

On the day we visited Miss Wolfgang’s kindergarten class at Weedsport Elementary School, Easton Friedel was taking charge. He was named “Calendar Captain” for the week – a coveted job in which one student stands before his classmates and goes over the days of the week and the months of the year.

Easton, it seems, has a knack for taking charge.

“Just the other day I was going over something with the students and some of them were not paying attention and he told the class to quiet down. He’s my assistant,” said Kristen Wolfgang, Easton’s teacher.

Easton, 5, has only been walking and verbal for a few years. He was born with Epidermolysis Bullosa or EB, a rare, genetic skin disease that occurs in 1 of every 50,000 live births. Easton’s skin lacks a key protein that binds the layers together. After he was born, CBS5 spent an entire day with his family learning what it is like to care for a child with EB.

Over the years there have been significant medical issues, including a 100+ day hospital stay for treatment of a lung issue doctor’s said was worse than pneumonia.

In 2015 we were there for Easton’s first steps, which was a major milestone that came years after most children accomplish the same. He would go on to defy the odds and graduate from preschool.

Last summer, Easton turned 5 years old and there was a family celebration of the milestone. Many children with EB don’t survive their first year.

Kindergarten was something Easton’s parents wanted for him, but no one was sure he could muster the stamina. It turns out he did. “He doesn’t complain,” teacher Kristen Wolfgang said. “He comes in and does his work and he leaves at the end of the day with a hug and says he will see us tomorrow,” Wolfgang added. She calls educating Easton “a team effort.” There is an occupational therapist who pushes into the classroom to work on some of Easton’s challenges. Words and reading are coming along fine, but fine motor skills are a challenge because his hands are so calloused.

The staff in the classroom has made modifications to pencils, adding rubber contraptions to try to make it easier for Easton to manipulate them. The people surrounding him say they are dedicated to making school work for Easton, and he seems plenty determined too.

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