Everyone Has Something: Abby's Story
In her book, this young author tells how she has tackled juvenile arthritis and two more diseases.
At only 19 months of age, Abby had her first arthritis flare, which began with limping and a swollen knee. After many doctors’ visits and testing, she was finally referred to a pediatric rheumatologist and diagnosed with juvenile arthritis (JA) in her right knee, ankle and pinky toe.
When she was 7, Abby developed uveitis. She responded quickly to steroid drops, but couldn’t stop them without a flare.
At 8, Abby was diagnosed with Crohn’s disease. At this point, her doctor started her on Humira. She began feeling “awesome.” She discovered that she could go to gymnastics classes and play with her friends without pain. Now that she was pain-free, she was less tired and needed less sleep. While she had always remained optimistic, joyful, silly and sarcastic, the transformation was amazing.
Unfortunately, like many children and adults living with arthritis, Abby’s journey still has its challenges. In 2019, Abby had to stop Humira, due to side effects, and was put on methotrexate. The side effects from the methotrexate were even worse — nausea, abdominal pains, mood changes and stubborn migraines. The mood changes were bad enough that her normal optimistic mood was impacted, and she didn’t want to spend time with friends. Her care team suggested a “medication vacation” since her disease hadn’t been active for a while. But that didn’t last long, so she restarted the Humira. She didn’t experience any side effects this time, but she ended up developing antibodies to the Humira.
“When I hit puberty, I had a really bad uveitis flare, and I had to have hourly eye drops,” Abby says. “Everything started to flare: my jaw, my other knee, the Crohn’s. I had nonstop nausea every day. So, we went to Humira weekly.” She overcame the antibodies her body had developed in response to Humira, and her levels are so good that her care team is talking about moving her back to every two weeks. She is doing great — symptoms-free, side effects-free and thriving.
“My ankle hurts sometimes, but it doesn’t get swollen. I don’t have to use eye drops anymore, and it’s helping with my Crohn’s. But when I have my flares, I can’t do my dance. And when my Crohn’s flares, it stops me from focusing in class and distracts me. I wear sunglasses sometimes because of the light sensitivity from uveitis, and I have to sit closer to the board.”
“At school, it’s easier to manage my pain because I have my friends. They understand what I’m going through, and they help me through it. When I’m at home, my parents always make me do stuff to make it feel better instead of just sitting around moping,” she says, smirking before adding, “which I don’t understand.”
A Community That Understands
“I think when they’re diagnosed young, it’s harder on the parents because you don’t know what’s going on,” Kerry, Abby’s mother, shares. “But it’s easier on them than if they were a teen because they don’t know anything else. I’d rather have the ‘what’s going on, what do I do’ as a baby than have her deal with the loss and grief of what’s not happening anymore.”
“Plus, I don’t remember anything that happened, so I don’t remember any of the blood draws they had to do or anything like that,” Abby pipes in. The regular blood draws, doctor appointments, and medications are just a normal part of her life.
The community the Ferraro family has built is incredibly strong. Their circle of other JA families are their best friends, and they support one another regularly, even vacationing with one another. “When Abby first started Humira, we had to go get bloodwork,” Kerry explains, “and Abby was stressed, probably more for the fact she’d start injections for the first time. So, we ended up having a video call with another JA mom, who also has arthritis herself, and let her 8-year-old daughter do her shot for her so that Abby could see it wasn’t bad.”
And Abby is passing along her knowledge to other kids.
“There was a little girl, Phoebe, who developed uveitis and had to go on eye drops, so Abby had a video call with her,” Kerry says.
“When I talked to her, it wasn’t just that she’d be OK,” Abby adds. “It was talking her through it. I liked it. She’s a cute kid.”
Dedication to Walk to Cure Arthritis
Abby’s family jumped right into action with the Arthritis Foundation soon after Abby’s diagnosis, creating the Abby’s Army Walk to Cure Arthritis team and volunteering with the Foundation to fight JA.
When Abby was around 8, her mom had her record a video where she described how she felt before Humira, in case she ever needed a reminder of why she takes her meds. After the first video, Abby kept wanting to record more videos. When that wasn’t enough, she sat down and started typing her story on the computer. Eventually, that story turned into a book, Everyone Has Something: Abby’s Story.
Abby and her family have been involved in Walk to Cure Arthritis since she was 2 years old — now over a decade. She has been the captain of the Abby’s Army team each year and was the youth honoree for the Walk to Cure Arthritis Philadelphia in 2019.
To date, the Abby’s Army team has raised over $125,000 for Walk to Cure Arthritis, making them one of the top fundraising teams in the Eastern Pennsylvania market each year and often in the top 10 nationally. In 2023, she was named the national youth honoree.
Abby and her small but mighty team raise funds through sales of her book, traditional outreach to family and friends, as well as asking for gifts from friends and business associates of her parents.
“I like connecting with other people and raising the money to help newly diagnosed people,” she concludes.