“I wish I was in heaven with Papi.”
In 2011, Mariah Aquino-Truss’s 5-year-old body was so wracked by agonizing pain from juvenile idiopathic arthritis (JIA) that she uttered those eight words to her mom, whose own father had recently passed away. Today, Mariah is a thriving high-school freshman who loves dancing, gardening, and making Tik Tok videos. She is also nearly pain-free and devotes much of her time to advocating for other kids with JIA. Her main message to them, some of whom remind her of herself when she issued that desperate plea: “There’s always hope and a ton of other people out there for you. You’re not alone.”
Searching for Answers
At age 3, Mariah began experiencing neck pain that would come and go without warning. Two years later, she developed left leg pain severe enough to cause her to walk with a limp. The pediatrician couldn’t find anything wrong and, after a week of watching-and-waiting, referred Mariah’s family to an orthopedic specialist whose next available appointment was several months away. By the time Mariah’s mom, Tory Aquino-Sims, brought her in, Mariah had developed a 13% curve in her spine, rendering one leg an inch-and-a-half longer than the other. “That doctor did testing and said he couldn’t find anything to operate on, and that Mariah could ‘resume normal function.’ I said, ‘No. My daughter can’t walk. She can’t sleep. She’s lost five pounds and she was only 35 pounds to start with. She cannot ‘resume normal function.’”
At the orthopedist’s suggestion, Tory made an appointment with a rheumatologist at Pittsburgh Children’s Hospital in September of 2011. “As soon as he saw her–her swollen hip, her limp, the inflammation visible on her scans–he knew what it was,” she says. The diagnosis: polyarticular spondyloarthropathy, a form of JIA that impacts the joints, ligaments, and other connective tissues. Her spinal curvature had resulted from severe inflammation and fluid build-up in Mariah’s right hip, which forced it to sit higher than the right.
At that point, pain had prevented Mariah from walking for three months; her mom would carry her or push her in a stroller. When driving, Mariah would ask her mom to avoid “Arthritis Hill”–a bumpy hill near their home–on particularly painful days. Then came the comment about joining Papi in heaven, which sent Tory dashing into the bathroom where “I cried my eyeballs out. We have all these hopes and dreams for our kids, and then you get hit with a diagnosis like this and wonder, ‘What will it mean for her? Will my baby be in a wheelchair? Will she be able to get a job?’”
After the diagnosis, a then-5-year-old Mariah began a regimen of steroids and a disease-modifying anti-rheumatic drug (DMARD). The steroids caused their trademark “moon face” chubby cheeks, which made it tricky for the normally chatty Mariah to speak at times and left her so hungry that Tory once found her in the middle of the night eating a rotisserie chicken as everyone else slept.
But the pain lessened dramatically. After about 12 weeks of her medication regimen, Mariah stopped taking the steroids but remained on her DMARD. Freed from some of her pain, Mariah and her family dove into advocacy and fundraising, guided by the Arthritis Foundation (Tory had contacted the local Pittsburgh office for guidance post-diagnosis.)
Finding a New Calling
In 2012, about 20 friends and family members joined Mariah for the Walk to Cure Arthritis 5K under the team name Mariah’s Movers. The following year, Mariah attended her first National Juvenile Arthritis Conference. It was a game-changer. “Mom, there are so many kids just like me,” Tory recalls her saying. That sense of community continued at JA Camp in the summer of 2016.
At one point, the Arthritis Foundation encouraged Mariah and her bestie big sister, Mauriauna, to hold an assembly for their middle school to educate students and teachers about JIA. “I felt pretty alone,” Mariah says. “Not a lot of people understood [my condition.] Sometimes I’d bring a walker to school to sit on, and people would ask me questions but not fully understand. I once asked a teacher if I could sit on it while everyone was standing or sitting on the floor. She told me, ‘You’re fine. If you sit down, I’ll need to send you to the nurse’s office.’ But I knew I didn’t need to go to the nurse’s office. So during the assembly, I explained, ‘I’m usually in pain, and you can’t see it.’”
Eventually, Mariah and Tory also created the Mariah’s Movers Facebook page to connect families touched by JIA, posting inspirational JIA-related news, clinical trial and survey info, and creating JIA Awareness Facebook profile frames for followers featuring their photo, which they can then use for their own advocacy purposes.
Tory says this sort of peer-to-peer advocacy lit a fire in her daughter. In an article on the Arthritis Foundation website titled, “A Family of Warriors,” Tory says, “This movement is bigger than her–this is her way of gaining power over arthritis. In school, she’s an active leader, she tries to help other kids…who have disabilities and special needs. But in the arthritis community, she loves to talk to kids all over to let them know that someone else is out here who knows what it’s like. Mariah now has in-person friends her own age who have arthritis, but there are many kids out there who don’t. Now they can find her on Facebook and know that someone understands what they’re going through.”
A Second Autoimmune Diagnosis and a Disappointing Flare-up
In 2013, Mariah began experiencing stomach pains and nausea after eating. At first, she thought they might be a medication side effect but her rheumatologist ruled that out and sent her to a gastrointestinal doctor, who suggested going dairy-free. When that didn’t help, the doctor mentioned it could be Celiac disease, an autoimmune disease in which the immune system mistakenly attacks the small intestine when foods containing gluten–primarily found in wheat, barley, and rye–are ingested. Based on her bloodwork, Maria was diagnosed with Celiac and advised to go gluten-free.
It’s thought that about one in four patients with an autoimmune disease will develop an additional autoimmune disease. Tory says the new diagnosis felt defeating initially, and cutting out gluten was difficult for this pasta-loving Italian family. And Maria experienced an arthritis flare when she first cut out gluten (Tory thinks it was related). But after three to six months, Mariah’s GI issues had abated.
In 2016, Mariah, Mauriauna, Tory and Tory’s mom, Tina Aquino, were attending the annual Juvenile Arthritis conference, one of their favorite events of the year. Mariah had been off steroids for five years and was doing well. One night, while walking to dinner with family and friends, Mariah felt pain in her ankle. Ankle pain wasn’t necessarily a new phenomenon for her–“I’d had it occasionally in the past but was fine with naproxen,” she says–but this pain seemed to be growing by the hour. A few days later, Mariah was off to JA camp with friends but “was miserable. My neck and shoulder hurt during archery, then I couldn’t sleep, which for me is usually a sign that a flare is coming.”
Back home, Tory took Mariah in for an MRI, to assess whether any permanent damage had occurred in her joints and to confirm that she was indeed in the midst of an active flare. “I remember waiting in a rocking chair,” Tory says, “praying we had been making the right decisions with her treatment.” Fortunately, the scan revealed no worrisome damage.
The flare took a toll on Mariah’s emotional health, nonetheless. “When she has a flare, she doesn’t sleep, she gets depressed and super emotional,” Tory says. “And instead of complaining about the pain, she lashes out.” The uber-tight mother-daughter pair work through it together, with mom constantly reminding Mariah, “You have to be in charge of yourself and advocate for yourself.” Tory will sometimes offer suggestions – “Are you in pain? Is that why you’re acting like this?” and, in time, that can be enough to prompt some inner reflection and help Mariah feel calmer.
Looking Towards the Future
Today, Mariah (nickname: Ri-Ri, rhyming with “Eye-Eye”) is the typical teenager when it comes to lots of things: She’s into hip hop, musical theater, and social media, and will happily snooze past noon any chance she gets. Her pain is well-managed and while she still gets sore from time to time, “It’s not bad,” she says.
Mariah also spends lots of time with Grandma Tina, a.k.a. Nunny.
They garden together (sunflowers, strawberries, and blueberries were in the summer 2020 garden) and Nunny’s love of plants has inspired Mariah to possibly study botany in college. Nunny also happens to live with arthritis, only in her case, it’s age-related osteoarthritis. Even though the two forms of the disease are very different (Mariah’s is auto-immune; her grandmother’s is not), they’ve still bonded over it. “We’ll make jokes over it,” Mariah says. “I’ll tell her, ‘It’s all your fault.’”
Life during COVID has seen the new high school freshman staying home most of the time; because her immune system is compromised by the JA, the stakes of catching the novel virus are even higher. “When I get sick, I get super sick and it stays for weeks,” she says. A bright light has been that Mariah has been able to see her best friend Zoey, who “doesn’t go anywhere either. We’re a pod. We drink coffee, hang out, dance. She doesn’t have JA, but she listens anytime I’m having bad day, she’ll come over, sit in my bed with me, and make me laugh.”
Then there’s the best friend she shares that room with–Mauriauna. “We are inseparable,” Mariah says. They sing a capella, play ukulele, draw, and make Tik Tok videos together, and steal clothes from each other (at 15, Mauriauna is just a year older). Big sis has also attended numerous JIA conferences, helped fundraise, and even given her little sis shots on occasion. Even though “I’ve sometimes felt left out, like a lot of attention was on her, I don’t mind it now.,” Mauriauna says. “I get to see her share her story with people. It’s inspiring seeing how much she’s grown.”
As for Tory, this professional hearing-aid fitter never thought she’d one day become a parent advocate for JIA, but the role suits her well. Early on, she found her inner Mama Bear coming though in situations where Mariah was being treated unfairly, like that teacher who refused to let her rest during class. (“We had kind words with that teacher. I said, ‘I’m certain you forgot, I’m certain you didn’t mean anything by it, but this is how you made my child feel.”) And when she and Mariah are invited to speak on-camera for various news stations, her desire to educate the public shines through.
During a July 2017 Juvenile Arthritis Awareness Month segment for CBS Pittsburgh, she managed to weave in several key talking points, including a succinct explanation of JIA (“[Mariah’s] immune system doesn’t know what to attack, so as opposed to attacking foreign invaders, it attacks her joints”); some surprising statistics (“Rheumatic diseases are more prevalent than muscular dystrophy, cystic fibrosis, and juvenile diabetes combined; there’s more than 300,000 kids in United States with arthritis”); and the important note that JA is “not the same as your grandpa’s arthritis,” meaning it’s not a gradual wearing out of one’s joints.
Her favorite thing: watching Mariah just be a teenager. “When I see her thriving, it brings me joy. We really enjoy the things most people take for granted. We just look at life differently. We consider ourselves really lucky because we know people who have failed treatment.”
For now, much of Mariah’s family’s advocacy work is going virtual. Mariah’s Movers Carnival, the family’s annual fundraising carnival featuring kid-friendly activities like pony rides, bounce houses, arts and crafts, and live music, is on hold, but they were able to raise $4,000 in donations this summer through friends and family, bringing them to more than $30,000 in total over the years. (Other advocacy highlights have included being named the 2012 Pittsburgh Walk to Cure Arthritis youth honoree and traveling to Washington, DC, to share her experiences with state representatives in an effort to improve access to care for people with arthritis.) And they’ll keep plugging away, because Tory and Mariah both know all too well what it feels like to be “in that dark tunnel after a diagnosis, looking for the light. The pain is not going to last forever, and that’s what I tell other moms we meet through Mariah’s Facebook page and at JA conferences.”
Next on the horizon: Mariah is about to become a big sister for the first time; Tory is due to deliver a baby girl in October.
In a Facebook post for Mariah’s recent 14th birthday, Tory called her “my warrior princess…my firecracker…one of the bravest, strongest kids I know. She is kind but fierce. Sassy but sweet. Stubborn but caring. She protects what she loves at all costs. And advocates for what is right. She’s not afraid to stand up and fight for what she believes in. I cannot wait for your future.”