This teenager has never known life without arthritis. Now she’s fighting to help others like her who live with pain.
“She went from running faster than me to not being able to walk.” As the mom of a normally energetic toddler, Tory Aquino found herself filled with worry and fear as she watched her 3-year-old struggle with insurmountable pain.
For three months, her daughter Mariah couldn’t even walk. “She said she didn’t want to exist anymore because of the pain,” remembers Tory.
Now age 14, Mariah Aquino-Truss knows more about pain than most adults. She has been living with chronic pain from juvenile arthritis (JA) since she was 3. But, like many children with JA, it took a while for her to be diagnosed.
Answers, and Questions
By the time Mariah was finally diagnosed in 2011 at age 5 with polyarticular spondyloarthropathy, a type of JA, her spine had begun to curve and the inflammation in her hip was so bad that one leg was an inch and a half shorter than the other, so when she walked, one leg dragged behind the other.
But the diagnosis brought more worries. “Will my child possibly not walk? Will Mariah possibly have to have surgery? What limits are going to be put on her because of this diagnosis?” Tory wondered.
“All we wanted was an answer. And for us, the Arthritis Foundation was that answer. They gave us so much hope and so much support.”
Partnering with the Arthritis Foundation brought the Aquino-Truss family more information and resources about this complex disease and the challenges it brings. Mariah and her sister, Mauriauna, teamed up with Foundation representatives to give presentations to classmates about arthritis, and Mariah started a Facebook group to reach other kids with JA — it now has more than 5,500 followers. She calls the group Mariah’s Movers, the same name as her Walk to Cure Arthritis team, which now has an Instagram presence, too.
“This is so much bigger than us,” Tory says. “What Mariah’s started — it offers so much hope to people. I don’t think we realize the impact it really makes.”
Mariah is not one to sit back and wait for things to happen. She has attended Arthritis Foundation JA camps, and she and her sister have both taken part in JA Conferences. The family has participated in local, state and national advocacy events, including the Advocacy Summit in Washington, DC.
“Although this disease is big and ugly and terrifying at times,” Tory says, “we have a humungous family that cares and that is there to support us and is dumping millions of dollars into research and raising awareness and giving us hope.”
Give more families like Mariah’s hope by making a donation to the Arthritis Foundation.
This month, the Arthritis Foundation is shining a light on people living with arthritis pain in recognition of Pain Awareness Month. Mariah is one of 300,000 children in the U.S. living with pain from JA — and she’s taken up the banner in the fight to gain support for people with arthritis and for research to find a cure.