Mariah Aquino-Truss, 8, is looking forward to going to a carnival from noon to 4 p.m. Sunday in Brady’s Run Park Lodge in Beaver County, where she’ll jump in an inflatable castle, ride ponies, have her face painted and play games with at least 100 other children. She won’t let the incurable disease she has battled for three years derail the fun.
For the third year in a row, Mariah is hosting the Mariah’s Movers Carnival to teach people about arthritis and to raise money for the Arthritis Foundation, which supports research, education and advocacy.
Arthritis is the No. 1 cause of disability in the United States, affecting more than 50 million people, including 300,000 children. In Western Pennsylvania, 11,000 children have arthritis. It is a painful, debilitating and potentially crippling disease that attacks joints.
“People don’t like to talk about this affecting children,” said Tory Aquino, Mariah’s mother. “They think it’s grandma’s disease.”
Mild symptoms started when Mariah was 3 years old. By the time she was 5, she was suffering bouts of severe pain that kept getting worse. Then she was unable to walk for three months. There were rounds of medical tests and months of uncertainty. Shortly after one set of specialists ruled out cancer, other doctors diagnosed polyarticular spondyloarthropathy, a form of arthritis. The disease is in all of her joints.
Mariah generally lives an active life. She is in second grade at Patterson Primary in Beaver Falls in the Blackhawk School District, where she loves to sing and write, and she reads at a fourth- or fifth-grade level, her mother said.
But on a typical day, “she has to wake up a half-hour early to be able to get up and get moving,” Ms. Aquino said. She needs treatments that are a form of chemotherapy, much like that received by cancer patients. She needs yearly steroid injections in her wrists and ankles. Ms. Aquino believes that a good diet and lots of vitamins also are helpful.
“For the most part, Mariah is happy and normal, but she has days when she just does not feel well,” Ms. Aquino said.
Mariah said, “Just because I have this disease doesn’t mean I can’t be a kid. It may be really hard some days, but I’m not scared!”
“Thirty years ago, children like Mariah would be in wheelchairs,” Ms. Aquino said. But with an early diagnosis that helps prevent permanent joint damage and good treatment from specialists, Mariah is doing well and “has not had a flare-up since last July.”
And that’s why the family, including older sister Mauriauna Aquino-Truss, sponsor the annual carnival. Admission is $5.
“Mauriauna is our biggest helper with the carnival, and she is a big help when her sister is in pain,” Ms. Aquino said.
Ms. Aquino is a single mother who works full time in sales. She has earned a master’s degree from Geneva College and serves as a school board member for the Blackhawk School District. She works with a small group of volunteers to organize the arthritis fundraisers and attends seminars and conferences on arthritis,
On May 31, Mariah and her team, Mariah’s Movers, will walk in the Pittsburgh Walk to Cure Arthritis at 8 a.m. at South Side Works.
Information: www.arthritiswalkpittsburgh.kintera.org or see the Mariah’s Movers page on Facebook.