Young Hero: Jack KacinAug 16, 2013 12:27PM ● By Bailey Hemphill
Jack suffers from a rare disease called CANDLE Syndrome, which is Chronic Atypical Neutrophilic Dermatosis with Lipodystrophy and Elevated Temperature. This means he has daily fevers, rashes, delayed growth and development, liver enlargement, arthritis, and more to deal with on a daily basis. He also has to take his medications twice daily. Although he has this disease, Kristi says he acts like he doesn’t have one.
“Jack travels to the National Institutes of Health (NIH) in Maryland monthly and endures many medical procedures,” she says. “But he never worries about them and is very cooperative.” She believes that one of the reasons why Jack is such a good sport with these procedures is because he just likes to have fun in every situation, even if it’s a difficult one. “He likes to make people laugh…He remembers people’s names, and he always asks how their day is going.”
One of her favorite things about him, though, is just how lovable he is. She explains that there is a playroom at the NIH facility where Jack always plays with the other kids. After one visit where Jack had to stay for a month, Kristi says everyone in the playroom knew who he was. “He gives hugs to everyone. He loves to snuggle…He loves his doctors that care for him in Omaha…[He just] cares about everyone and is very social.”
Above all, Jack is a hero for other children, as well as Kristi, because he loves life no matter what. “He is truly an extraordinary boy with a big heart,” she says.
There will be a spaghetti feed, silent auction, and raffle event on September 22 at the Firefighters Union Hall (6005 Grover St.) from 12-6pm to benefit Jack and his parents. If you would like to donate to Jack, visit gofundme.com/JackKacin.
Do you have a Young Hero in your life? Tell us their story. They might be featured right here on our Young Hero page! Contact Bailey Hemphill.