Daughter’s Arthritis Drives Family to Action

By Allison Wilcosky | Feb. 26, 2024

Sammy loves Lucas the Spider, unicorns, drawing and playing video games with her parents. She loves to play Mario Wonder as Princess Peach.

At 5 years old, she also has systemic juvenile idiopathic arthritis (SJIA).

In the summer of 2020, Sammy was running a persistent fever that confused her parents, Ronny and Joey, who had the family under lockdown due to COVID. After two weeks, Sammy was taken to the ER at Boston Children’s Hospital. “The team at the hospital is very proficient at diagnosing and ruling things out,” says Ronny. “We were able to get a diagnosis in a week, which is not typical for an SJIA diagnosis.”

Sammy was sent home on biologics that eventually weren’t effective, and as another flare was hitting, suspicion mounted that she may have been intolerant to the medication. “Her disease was sort of out of control without us knowing how or if she was reacting to the meds,” says Joey. “We ended up back in the hospital with no handle on the situation, and that’s when things got really serious.”

In 2021, Sammy developed macrophage activation syndrome (MAS), an uncommon but potentially life-threatening complication of SJIA, which kept her in the hospital for two months. Due to the uncontrolled inflammation at that time. she also developed interstitial lung disease.

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Since recovering from MAS, Sammy has been on a medication regime that is working for her; she proudly shows off her LOL Dolls she gets as a “poke prize” after getting her infusion. The current medication offers her stability but leaves her immunocompromised as a result. “When she gets sick, the stakes are a little higher for us,” Joey continues. “We never know what’s going to trigger a flare. We hope we now have the right mix of meds to keep her stable, which she has been for a year and a half. It comes at the cost of living sort of an isolated life in a lot of ways.”

Sammy attends virtual school and loves to play outside with her friends. She has even started to participate in soccer.

“We do our best to be outside a lot, but we live in the Northeast, so the winter is really tough,” says Joey.

Ronny advocates for her daughter with her website, educating people about SJIA and issues surrounding health care, insurance and more.

“I want the parents of her future classmates to understand how serious her illness can be in hopes that they don't send their kids to school sick. I need them to understand how much work it has taken us to get here.” A perfect example happened recently at soccer practice.

“As we start talking to the other parents there, it comes out that Sam's not in daycare,” Ronny remembers. “They ask why, and when we share, they’re like, ‘Whoa, she looks totally normal. We had no idea there could have been anything wrong.’ I think it's easier for people to overlook how serious things can be when she seems so normal, and they don't see her at her worst in a flare or at the infusion center for seven hours of monthly maintenance meds.”

Sammy’s All-Stars

Soon after Sammy’s diagnosis, Ronny and Joey were trying to find answers. “We were new parents that just had this crazy thing happen,” Joey says. “And we knew Sam had something rare. So, we were looking for a way to meet other families or people that might be in a similar situation to us.”

As they were looking, they found out the Boston office of the Arthritis Foundation was holding its Walk to Cure Arthritis — but it was the same day as a Boston Children’s Hospital (BCH) event.

“We hold BCH near and dear to us, and we had just spent a long time essentially living there, and we were pretty torn between which event to attend,” says Joey. “It came down to where we could meet someone like Sam.”

They also felt they could have an impact with the Arthritis Foundation. “The Arthritis Foundation, which is also a huge organization, felt like at least the Boston event could be a good place for us to go and move the needle,” says Joey.

And they have certainly moved the needle. Since starting their team in 2022, Sammy’s SJIA Super Squad has raised over $52,000. Ronny was also an advisor on the 2023 Walk committee.

“We were completely blown away,” Joey says. “We thought we’d raise a few hundred dollars or $1,000. It just became its own thing and took off. And these are just people — they’re our friends and family. There are no businesses or corporations. Everybody really stepped up and supported us. It’s not like somebody donated $10,000. It’s just $50 here, maybe $100.”

“We also had a lot of neighborhood participation, which was really cool and nice,” Ronny acknowledges. “After the Walk, we walked around and brought everyone Super Squad tote bags.”

The family is looking forward to another incredible event, especially now that Sammy has been selected as one of the national honorees for Walk to Cure Arthritis in 2024.