“It’s more fighting with doctors and nurses to get them to listen to me,” she said.
“It’s taught me a lot about standing up to people, to see that he gets the proper treatment.”
On their 2008 ER visit, they told the staff Johnathan had HAE, she said.
“They had never seen a patient with it. They didn’t know what to do with him. The ER doctor admitted to me he didn’t know what to do.
“That’s what started me researching what to do.”
The second-annual HAE Awareness Day was May 16.
“People don’t know about the disease or that they have it,” Harrington said. “We ordered 200 awareness bracelets. We’ll send them out.”
He has two stepsons, Chris and Michael Ardito, and Michael recently wrote a paper on HAE that he delivered at school.
“My stepfather has HAE and had an attack in 2008 that landed him in a coma for 5 days,” Michael wrote.
“Although it is extremely rare amongst most people, my 2 year old sister has a 50 percent chance of having this disease as well, so to me, it feels pretty common.”
‘SPREAD THE WORD’
Michael asked that people spread the word and suggested they look up HAE at haea.org.
“Not many others know about HAE, including doctors and hospital workers. You can help raise awareness just by getting everyone you know to tell at least two people each.
“Hopefully, if my sister does have HAE, by the time she is my stepdad’s age, there will be a cure.”
Johnathan’s mother, Donna Jerdo of Moriah, said she’s proud of her son for working to beat the disorder.
“I can’t believe how far he’s come. He’s shown a lot of courage.”
Email Lohr McKinstry:firstname.lastname@example.org