Sarah Smiles Even with Juvenile Idiopathic Arthritis
Iris Schwartz knew there was something wrong with their second daughter, Sarah, when she was just two weeks old. She cried so much and there was little her parents could do to console her. Things only got worse as she got older.
During her 6-month well visit, Sarah could not bear her own weight. At 7 months, she seemed uncomfortable and was no longer doing things she previously mastered such as pushing up with her hands. Sleep also was an issue and she woke up crying all of the time.
At 8 months, following a 5-day hospital stay, she was diagnosed with juvenile idiopathic arthritis (JIA; formerly known as Juvenile Rheumatoid Arthritis or JRA). By then, the arthritis affected her right wrist, elbow, knee and ankle. She could not straighten her arm or her leg, and was in a lot of pain.
"It was absolutely heartbreaking watching our little baby suffer and we were desperate for answers," recalls Iris.
Sarah's arthritis was not responding to the prescribed Naprosyn, so her parents traveled to doctors in New York, New Jersey and Pennsylvania in search of help. They all recommended cortisone injections in all 4 joints. They reluctantly agreed to have her put under anesthesia to receive the injections, and although they were assured this would work miracles, these treatments also were ineffective.
Sarah, now 15 months old, also suffers from food protein induced enterocolitis syndrome (FPIES), a condition that causes her to vomit until she goes into a state of shock simply from eating trigger foods such as rice cereal. She has just a handful of foods that she can safely eat and will be needing occupational therapy to deal with her food aversions.
Sadly, Sarah is distinctive for being one of the youngest cases of JIA on record and the only known child to have both JIA and FPIES. These conditions have interfered with her physical growth. She has not grown in height or weight since October 2010.
There is little time to take her to Gymboree and music classes, or do things most toddlers get to enjoy because of all the treatments she needs. On a weekly basis, Sarah receives injections at home and undergoes physical therapy. She also gets her blood drawn monthly and visits numerous specialists to treat her conditions. Between the FPIES and JIA, each week seems to present new challenges.
Sarah now appears to be pain free and has made a lot of progress. She is a determined little girl who loves to climb stairs and is starting to take her first steps with assistance.
On May 1, 2011, the Schwartz family will be participating in the 2011 Essex County Arthritis Walk at Verona Park as the "Sarah Smiles" team. It's an opportunity to have some fun, raise awareness, raise funds, and support Sarah and the nearly 300,000 children who live with arthritis. You can support Sarah Smiles by joining the team or donating to the cause.
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