Carmel girl honored for work raising $160K for Arthritis Foundation


For as long as she can remember, Lilly Cooley has suffered from severe aches and pains throughout her young body. Sometimes, her juvenile arthritis is so debilitating that she can’t get out of bed. Other times, she remains indoors during recess with a heating pad to help her make it through the day.

Instead of feeling bitter about her condition, Lilly, 11, who will be a sixth-grader at Clay Middle School in the fall, has been motivated by it to raise funds for the Arthritis Foundation, which aims to find a cure for the disease that affects 60 million adults and 300,000 children.

Lilly has raised more than $160,000 in the last several years, which contributed to her receiving the 2022 Dawn Hafeli Award for Youth Leadership from the Arthritis Foundation July 15 at the organization’s annual Juvenile Arthritis Conference. She and her family traveled to Orlando to accept the honor.

“(I was crying) big, happy tears. I was very, very proud of her,” said Courtney Cooley, her mother. “It’s been such a journey of ups and downs. This is something I’ll think about when we’re having another flare. We’ll go back and look at the pictures.”

CIC HEALTH 0726 Lilly Cooley 2
Lilly Cooley receives frequent transfusions and other treatments to help treat her juvenile arthritis. (Photo courtesy of Courtney Cooley)

Lilly’s fundraising efforts began several years ago when she and her family launched a run to benefit the Arthritis Foundation and Peyton Manning Children’s Hospital. COVID-19 put the event on hold, and the family may revive it at some point, but Lilly continued fundraising by recruiting teams to participate in other fundraisers benefiting the cause.

Most people don’t have a good understanding of her condition, Lilly said, thinking arthritis only affects elderly people. Many assume she merely suffers from occasional achy joints, but juvenile arthritis and its treatments entail much more than that. The disease can damage organs as well as joints, and because there is no cure, Lilly is prepared to manage it for life.

Lilly’s symptoms began when she was 18 months old, and she received her diagnosis at age 3. Since then, it’s spread to 20 places in her body, and she’s endured injections, low-dose chemotherapy, medications and infusions.

It was during an infusion session she learned she had won the award.

“Some infusion days are pretty hard,” Lilly said. “(Learning I won) helped, knowing that I had helped that much and raised that much money.”

Lilly doesn’t plan to slow down her efforts to benefit the Arthritis Foundation anytime soon.

“I definitely want to keep moving forward with fundraising,” she said.

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