Jillian, 11, will take part in the July 13 5K run/walk that starts at The Great Escape & Splashwater Kingdom and incorporates a trail around Glen Lake. All proceeds of the event will support the programs, services and research to youth and individuals with arthritis.
“For us it’s very important because we want other people to be aware of what she goes through,” said Jillian’s mother Tieka. “For us to raise awareness to let people know what she goes through and what other children go through, that’s extremely important to us. It’s a huge honor because it makes her feel validated.”
Jillian, a competitive person and lover of all things related to dancing, was diagnosed with Juvenile Arthritis when she was 9 years old. One of 3,000 kids with Juvenile Arthritis in the Capital Region, first learning that she had the disease wasn’t easy to deal with.
“I totally freaked out and thought that no one else had it and that I was weird because I didn’t know anyone else who had it,” Jillian said.
But hearing about the Arthritis Foundation on the radio one morning would help Jillian realize she was not alone.
“She went to the car one morning and came running in and said, ‘Mom, there’s this little girl who’s the same age as me and she has arthritis and she’s on the radio,’” Tieka said.
That moment last June led to Tieka and Jillian going to Albany for an arthritis walk, where they would meet Regional Director of the Arthritis Foundation Eileen Reardon. From there, “it has just spiraled,” as Jillian and her family have become actively involved in spreading awareness.
“I have a family member who suffers from arthritis and I’ve seen this person who I care about and respect very much become a very different person because of the mobility issues that it brings, the challenges that it brings,” Reardon said. “[Jillian] has been put center stage because I think it’s stories like Jillian’s that drive the attention of arthritis. It really is putting her center stage but allowing her to tell her own story.”
Jillian’s form of arthritis affects her tendons and knees. There are 100 different forms of arthritis and the debilitating disease will affect one out of every five people. Two-thirds of those diagnosed are under the age of 65.
The Arthritis Foundation helped Jillian find Michael Higgins, 15, who was last year’s Queensbury “Jingle Bell Run” honoree and is also from South Glens Falls. The two have become “two peas in a pod” and have helped catapult the awareness of a disease that is often misinterpreted as something that only affects the elderly, although it is so widespread at younger ages as well.
“He kind of already has built a path for me,” said Jillian, who has seen firsthand what it’s like to be around people who don’t understand the disease.
“It gives us an outlet of having a shoulder to cry on, someone that she knows—the only person who she can talk to who physically understands what she feels,” Tieka said.
[The awareness] has grown tremendously in the past two years and we will continue to do this, so hopefully it just gets bigger and bigger.”
Among the supporters of arthritis awareness are the 29 other members of Jillian’s “Jilly’s Jumping Jelly Beans” team that will be doing their part at the 5K course on July 13.
“It’s really cool because a lot of people get to learn about a lot of the fundraisers in South Glens Falls,” Jillian said. “A lot of my friends get to learn about it and they’re doing the walk this year with me. We have a lot of supporters, friends and family. It’s very exciting.”
Individuals raising $50 or more will receive a free admission pass from the Great Escape & Splashwater Kingdom to be used on the day of the event. There will also be Tommie Copper apparel distributed and a chance to win a Kindle Fire HD to go along with registration.
The race gets its name from the annual event in December, but that’s not to say the sound of jingle bells won’t be in the air on the summer day. Registration the day of the event begins at 7 a.m. The run starts at 8 a.m. For more information, visit www.arthritis.org.
