“Don’t run away from challenges, run over them.”
This 2017 T-shirt slogan for Graci Diggs’ fundraising efforts toward the Arthritis Foundation perfectly exemplifies her.
“That is kind of how Graci has lived her life,” said her mother, Anna. “It is a challenge, not a struggle.”
Diagnosed with juvenile rheumatoid arthritis (JRA) at age four, Graci faces challenges every day. Many mornings it’s hard to get out of bed on her own, as her joints cause her severe pain and her immune system often is compromised. However, Graci doesn’t look at her ailments as a struggle. She keeps active by playing on a traveling softball team, the Lady Cardinals, fishing at a family friend’s pond and riding with her “bicycle posse” around the streets of Tipton.
Her spirited ambition in facing challenges has persuaded legislators to alter step therapy medicine programs and raised thousands of dollars for the Arthritis Foundation, earning her the 2016 Emerging Leader in Advocacy Award. Graci does not run away from challenges. She runs right over them.
Challenges, not struggles
Graci was diagnosed with JRA in 2009, but she experienced signs and symptoms unknown to Anna and her husband, Aaron, since she was 2 years old.
“She had fevers that would spike and then go away. She had rashes. … We didn’t think anything of it,” Anna said.
Anna recalled the day she knew something more was wrong with Graci. The morning of Aug. 2, 2009, Graci cried, complaining she couldn’t put her shorts on.
“I said, ‘Oh come on, hurry up, let’s go.’ Then her cry changed, and I knew something was wrong. Her knee was almost the size of a volleyball,” Anna recalled. After physicians sent her to an orthopedist, they knew seeing a pediatric rheumatologist was in order. Going to St. Louis or Kansas City was not attainable for the family since Aaron out of work and the family without health insurance at the time due to the recession. “We were begging them if we could go somewhere closer.”
Their wish was granted when Dr. Darcy Fozenlogan, an adult rheumatologist in Columbia, agreed to treat Graci. After Fozenlogan retired, Graci started to see a new pediatric rheumatologist, Dr. Anjali Patwardhan, at Women’s and Children’s Hospital in 2012. In treating her JRA more aggressively, Patwardhan advised Graci to start taking medication that helped her go into remission for two years.
“It was her miracle drug, however, when her body changed during puberty … she came out of remission,” Anna said. “She is now taking the biologic, Humira, and is doing OK.”
Graci still fights complications with the disease, such as having inflammation in her knees and ankles, back pain and occasional stiffness in her hands. Graci also has eye screenings every three months to watch for uveitis, an illness that can cause blindness if not treated.
When the family knew JRA was not going away, they learned about ways they could get involved and first began raising awareness for the Jingle Bell Run in Columbia. In October 2012, Graci became involved with the event, raising almost $3,000 for the Arthritis Foundation the first year.
“Graci showed so much enthusiasm with it, she was asked to be the youth honoree the next year,” Anna said. “She has just exploded into advocacy from there.”
Awareness and advocacy
Since then, advocacy and awareness for JRA has been two huge things for the Diggs family. In 2013, they sold 750 tickets for Arthritis Day at the Park at Busch Stadium in St. Louis, and Graci has been able to throw out the first pitch twice during her involvement with that annual project.
For the last three years, Graci and her family have encouraged doctors’ offices to provide applications for families with kids first diagnosed with juvenile arthritis, in turn receiving a free care package with information, a journal, teddy bear and other resources.
She has held awareness campaigns at her school, hosted trivia nights and started her own fundraiser, Cans for a Cure, in 2014, where contributors throw their cans in the Diggs’ front yard.
“We had a Facebook event, had 2,000 invites and had 940 pounds of cans donated that first year,” Anna said, noting St. Louis and Mid-Missouri news coverage inspired an area recycling company owner to price the aluminum cans at cost. “Instead of 38 cents we got 75 cents a pound. He logged everything we brought in, and at the end of the year, he wrote her a check for $1,500.”
Again, raising cans this year and hoping to reach a 1,000 goal, Cans for a Cure gave Graci her initial fame in Mid-Missouri and beyond. More notoriety came when Graci’s advocacy helped influence important legislation and landed her big awards.
Former State Rep. Denny Hoskins, now a Missouri senator, sponsored House Bill 2029 a few years ago, which discussed step therapy medication. Anna said the bill basically “cut out the middle man,” allowing doctors to prescribe medicines to their patients without trying other medications pushed by insurance companies first. This happened to Graci.
Graci testified to legislators about step therapy twice, the first time without Humira and in a wheelchair, and the second time on Humira and showing signs of improvement. Her healthier state impressed legislators, who unanimously passed the bill and it was ultimately signed into law by Gov. Jay Nixon.
In 2016, Graci received Youth Service America’s Every Day Young Hero award, which gave her a three-year scholarship to help with her charitable efforts, she advocated for arthritis research in Washington D.C. and spoke about medicine expense on CBS Sunday Morning News. This year, Graci accepted the 2016 Emerging Leader in Advocacy Award for the Arthritis Foundation, the highest honor a person under 21 can receive from the organization.
“We spent a few years in anger and questioning, but now we know why. Whatever God’s will is, we are willing to fulfill it,” Anna said. “I think staying focused on the Arthritis Foundation and what we can do to advocate and help others has helped us concentrate on the bright spots and not dwell on the negative aspects of having arthritis.”
Teaching others to run over challenges
Graci and her parents’ openness about JRA has garnered a lot of support. Graci’s best friends bring popcorn and a movie over when she has been sick. Graci’s teachers work with her to help her succeed. Graci’s family, including cousin 15-year-old Trenton and older sister, Logan, stand beside Graci in her trials and tribulations. Graci and her “JA BFF’s” attend each other’s fundraising events, face time during injections or meet up at conferences.
Markie Bullington and Meghan Anselm may understand Graci better than anyone, living through it themselves. Graci cherishes her mentors, assisting them with the Silver Ball fundraiser, listening to their advice at events they help lead and walking beside them at their fundraising efforts, such as the Arthritis Walk in St. Louis.
The 12 year old now pays that forward to younger kids who have JRA, such as taking a fake injection with a pen to let them know it doesn’t hurt.
“I tell them keep fighting through no matter what, and stay active. Just keep going,” Graci said.
With all Graci has accomplished in her young life, her parents are encouraged she will continue to face her challenges with grace, responsibility and determination into adulthood.
“I don’t want Graci to grow up being defined by her arthritis, but I also want her to grow up and say, ‘Yes, I have it and it is OK. But I’m not going to let it keep me from being who I want to be,’” Anna said. “She has pretty well done that.”