Siya: Our Struggle & Feelings Are Real

By Anthony Williams | Feb. 12, 2025

Wanting to be supportive of other kids like her with juvenile arthritis (JA), Siya was thrilled to be chosen as a national honoree for the Arthritis Foundation’s 2025 Walk to Cure Arthritis.

Her mother says Siya, who will turn 13 this spring, wants to spread awareness about JA near and far — and deep and wide — because “my daughter’s condition is not what any kid should get. A young kid having to go through treatment for anything is tough. It affects the quality of life of so many children — and can stop them from doing many things other kids regularly do, like playing volleyball or running around and being active.”

Participating over the past three years in Atlanta’s Walk to Cure Arthritis, Siya, her parents and younger sister want to assure others going through similar challenges that they’re not alone. “It’s OK to feel alone at first,” Siya says. “Our feelings are real. And they help us understand this condition better.”

“What helps even more,” she adds, “is going to a JA camp, or a Walk or Jingle Bell Run event, or a support group meeting, to get to know others who share a common experience. This helps us understand our commonality — and reminds us that we’re in this together and are not alone.”

Painful Knees Since Age 3

Siya first started complaining about pain in her knees when she was around 3 years old. “It would come and go, which was very confusing to us,” recalls her mother, Surabi. “We thought it was growing pains, but an MRI finally proved, when she was about 5 and a half, that it is arthritis. Though I’m a microbiologist, I had never heard the term ‘rheumatoid arthritis’ before and had no idea what it was until then.”

Confusing everything even more was Surabi thinking her daughter was such “a super healthy kid for the first few years.”

“I don’t remember going to a drug store to get anything for her early on, since she seemed to be so healthy,” Surabi explains. “But when she started getting sick, it was an extreme shift. Seeing her being pricked by so many needles in her body was hard. Then all the medications, like weekly shots. And it wasn’t just the physical pain Siya endured. There were also big anxiety issues. Getting blood work, an ultrasound, whatever — the hospital used to scare Siya. Who wouldn’t be scared? She was going through a lot.”

Surabi says Siya and their family found their community of comfort by getting active with the Arthritis Foundation. “Before, we did not know anybody with this condition. Then, Siya went to JA camp, which was a game-changer for her. Attending the JA Family Summit was another turning point for all of us.”
 

Everybody’s Different

“Each body is different,” Surabi points out. “As Siya’s mother, I’ve been watching this for several years now, all the fluctuations. So, I’m being realistic. But that’s also where my optimism comes in. Preparing and being prepared. The Arthritis Foundation has given us avenues for Siya to get connected and has provided opportunities where she feels very comfortable being herself.”

Surabi says her daughter has great empathy for every kid who’s challenged by arthritis or another rheumatic illness. “Siya observed some friends with JA having problems with their fingers, like struggling to lift a pen. She notices things like that. She told me, ‘My arthritis is in my knees, but at least my fingers are fine.’ She feels lucky when comparing her situation to someone else.”

Now in 7^th grade, Siya keeps on keeping on. She loves to sketch, sculpt, write and sing. Science is her favorite subject in school. And she’s thinking about having a career in public relations because she enjoys being around people so much. Along the way, she’s determined to try to help other kids and families make the best of their challenges with JA.

“Our struggle is real,” Siya maintains. “Our feelings are real, too. I want to help and support other kids who are going through this today and also be there for future generations to help cure this disease.”