When Mariah Aquino-Truss was just five years old, she was in so much pain each day she told her mom, Tory, that she “didn’t want to be here anymore.” Imagine hearing such an admission from your young daughter who was newly diagnosed with a form of juvenile arthritis (JA) known as polyarticular spondyloarthropathy.
Polyarticular spondyloarthropathy is a juvenile form of ankylosing spondylitis, a chronic, long term disease that affects the joints, ligaments, tendons and entheses. Shocked, saddened and ferociously determined to help Mariah and her family, Tory set out to find help – a road that led her to the Arthritis Foundation.
“Getting in touch with the Arthritis Foundation saved my life,” said Tory. “The people at our local office helped us so much and I will always be thankful for them. Eventually, our local office lead us to our first Walk to Cure Arthritis, our first National Juvenile Arthritis Conference, JA Camp and so much more.”
Tory, Mariah and her older sister, Mauriauna, formed their Walk to Cure Arthritis team, “Mariah’s Movers” and started their fundraising efforts for the Arthritis Foundation. In 2012, Mariah was named the local youth honoree at the Walk to Cure Arthritis in Pittsburgh. They began hosting an annual carnival to support their Walk to Cure Arthritis team, and have raised more than $20,000 since 2011!
“When Mariah saw the national youth honorees on stage at the JA Conference, she told me that’s what she wanted to do. That was the level of constituent she wanted to become with the Foundation,” remarked Tory. “When we were told she had been selected for the national honor last year, we couldn’t believe it!” In 2016 at the JA Conferences in Phoenix, Arizona and Philadelphia, Pennsylvania, Mariah proudly took the stage to receive her National Youth Honoree Yes flag, looking forward to raising her voice for kids just like her.
In the last few years, Mariah, now 11 years old, has also become increasingly interested in advocacy. The entire family has participated in both local, state and national advocacy events, including the Advocacy Summit in Washington DC. In learning to tell her story, Mariah has been able to find her own voice and speak to her representatives about her experiences, how important access to care and treatment options are for people with arthritis.
“There is a powerful feeling you get from advocacy and those summits. Sometimes results may come slowly – sometimes not at all! But you’re in a position where you are the face of all the numbers and dollars that are being debated and your voice can be heard,” says Tory.
Today, Mariah is feeling much better after starting on biologics and for the first time since her diagnosis, some of her medications have been lowered. Mariah is looking forward to the Walk to Cure Arthritis in Pittsburgh this weekend with her “Movers,” and performing with Mauriauna and their musical show choir, The StrandTastics, in their summer music show. Mariah has been performing for the last two years with the group, having to sit out one year during a bad flare, but is excited and energized to do something she loves.
Mariah, Mauriauna and Tory will also make their way to the 2017 JA Conferences to reconnect with their friends, meet new families and learn more about new medication, treatment options and updates about the Arthritis Foundation. Participating in their fourth conference this year – Tory believes the conference has helped each one of them individually, including Mauriauna, being around and emboldened by others that are going through the same experiences.
At 12 years old, Mauriauna has participated in sessions at the JA Conference alongside her sister, learning more about the disease and how to express her feelings. “Participating in the conference has helped Mauriauna so much, especially the sibling sessions that Lauren McAllister and Logan Lentini hold. These sessions were really a blessing, and Mauriauna has learned that she is just as important as her sister, that her feelings, concerns, experiences and voice truly do matter.”
“All I want for both my girls is for them to feel empowered in this world,” says Tory. “All of these opportunities – from walking with our team to sharing experiences with our representatives – have allowed each of us to raise our voices and stand up for kids and families like ours.”