Mansfield Child Fights Juvenile Arthritis, Misdiagnosis

3-year-old Ava Santiago was misdiagnosed for most of her life. After a year and a half of seeing specialist after specialist, her mother was starting to loose faith in the medical community, when one doctor took one look at Ava and said she had Juvenile Arthritis.

“This hospital did every test to her…everything you could think of,” Ava’s mother, Lisa Santiago said. “They couldn’t figure it out for the life of them. She always had a temperature and was always congested, [the doctors] were just baffled.”

Later that year, she was taken to another specialist, who, after three months of the other doctor’s previous assessment, confirmed that Ava had Juvenile Arthritis.

Juvenile Arthritis is technically an “umbrella term” used to describe many autoimmune and inflammatory conditions that can develop in children. Ava has Polyarticular Juvenile Rheumatoid Arthritis, which means she has several joints affected by sudden flare ups, along with many other flu-like symptoms. Currently, her wrist, elbows, knees, feet and toes have flare ups on and off. Ava is taken in for Chemotherapy every week to treat her condition, and also takes Meloxican, folic acid and Prednisone to help relieve inflammation.

Ava’s mother is currently trying to help raise funds to help with the costs of treatment for Ava. She said that Ava is doing very well right now, and said if you compare how she looked three months ago to now, it is “unbelievable.” She said the physical therapy offered at the in Mansfield is especially helpful.

“It’s wonderful because it saves a lot; we don’t have to drive to Boston or Waltham every evening,” she  said.

Currently, Lisa Santiago is raising money and looking for sponsors for the upcoming Boston Arthritis Walk, which is taking place Sunday, Sept. 18 from 10:30 a.m. to 2 p.m. As of Sunday, July 3, she has raised over $600 of her $2,500 goal. Next week, both are traveling to the Juvenille Arthritis Conference in Washington D.C., where Ava’s story will be featured to help raise awareness of the condition.

 “They’re going to feature her story, because there are a lot of kids like her who go undiagnosed for so many years,” Santiago said.

Currently, there are around 300,000 children in the United States who are diagnosed for Juvenile Arthritis, with about 1,000 new children diagnosed every year. While most of these cases are mild, some, like Ava’s, can be extremely difficult to treat.

If you would like to hear more about Ava’s story, they visit her blog. If you would like to donate for the Boston Arthritis Walk, then click here.