People thought it was “cute” when Aiden Downs wobbled on his feet as a toddler. But the little boy’s unsteadiness became alarming when Aiden was still using a stroller at age 5 because he could barely walk.
By then, Aiden had been diagnosed with juvenile arthritis, which affects nearly 300,000 children and teenagers in the United States. The medication he was prescribed wasn’t working nearly well enough to improve his severe, debilitating symptoms.
“He couldn’t run, jump or play like the other kids,” says Aiden’s mom, Ashley Lenger. “I wondered what his future would be like. Aiden loves firemen, making me follow fire trucks in my car. It broke my heart that becoming a fireman would not even be a possibility for him.”
After years of frustration, Aiden’s parents turned to Joseph M. Sanzari Children’s Hospital at Hackensack University Medical Center after learning about the hospital’s pediatric rheumatology program. The nearly four-hour round trip from their Trenton, New Jersey, home quickly proved worth it after the family connected with Suzanne Li, M.D., a pediatric rheumatologist at Hackensack.
“When I first saw Aiden, he was so limited in walking and moving most of his joints, and he was waking up at night in pain,” Dr. Li recalls.
Pivoting Treatment Choices for Juvenile Arthritis
After reviewing Aiden’s medication use since his diagnosis three years earlier, Dr. Li tried a different biologic drug. Developed and refined over the past two decades, biologics are typically used to dampen an overactive immune response in certain diseases.
“The good news is, there were different biologics to try,” Dr. Li says. After testing several biologics and doses, Aiden markedly improved with a biologic that’s delivered intravenously, helping his body more effectively absorb the medication. The medication was combined with methotrexate, another type of immunosuppressant.
Identifying an effective treatment combination has led to a remarkable transformation in Aiden’s ability to live more like any other child. “He wasn’t in pain every day and was able to go to the amusement park without needing a stroller,” Dr. Li says. “He’s now a normal child despite his arthritis, which is considered to be in remission on medication. We hope that someday he can stay in remission without medication.”
No Holding Him Back
Now 10 years old and in the fifth grade, Aiden is an accomplished saltwater fisherman who loves catching stripers with his dad, Brian. He can run and play with friends, no longer complaining of daily pain.
“The old me hoped he would live a normal life. With the way he is now—able to conquer anything he tries—my hope is one day that Aiden won’t have to take medication anymore,” Ashley says. “But the disease isn’t holding him back with the medication he’s on.”
Ashley also praises team members from the Child Life team and Infusion Center, who have eased Aiden’s path and made his regular treatment appointments “fun.”
“Everyone goes above and beyond making him feel welcome and comfortable there, and that’s a big thing for children,” Ashley says.
Next Steps & Resources:
- Meet our source: Suzanne Li, M.D.
- To make an appointment with a pediatric rheumatologist near you, call 800-822-8905 or visit our website.
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