SPRINGDALE, Ark. (KNWA) — From around Northwest Arkansas to around the state, Evan Lee is now taking his experience of living with spina bifida and Chiari malformation to a national stage.
Spina bifida and Chiari malformation are birth defects that affect the spinal cord and cause brain tissue to extend into the spinal canal. Evan has been treated for the conditions since birth.
For much of his life, Evan had been seen by doctors at Arkansas Children’s in Little Rock and is now primarily taken care of at Arkansas Children’s Northwest in Springdale.
Prior to its opening in February 2018, Evan and his family had advocated for ACNW to be built. He even helped lay the foundation for the hospital when he ordered the final beam be lowered when he was 7 years old.
Even before that, in 2017, Evan was the Champion Child for the Will Golf 4 Kids tournament and the Color of Hope Gala to benefit Arkansas Children’s Northwest and has served as an ambassador since.
After advocating for others like him in Arkansas, the now 11 year old will represent kids around the country as he’s been named the 2019 Children’s Miracle Network Hospital’s Champion.
“I was actually pretty amazed because I never thought I’d get to do that,” said Evan when he thought back to when he found out his story would be shared around the country.
Evan is one of 10 kids nationwide chosen as a spokesperson for CMNH. He will represent 170 hospitals. “This means I’m representing over 700,000 people in the U.S.,” said Evan.
Evan’s mother Amanda Robinson said she believes her son was picked to represent CMNH because of how he deals with life. “There are no bad days he’s always happy and I don’t even think that he realizes he has those characteristics.”
To read more on Evan’s new role as a CMNH champion, click here.