Written by Jill Nossa Wednesday, 14 May 2014 00:00
To say that Sara Testa has been having a difficult year would be an understatement. During a time when the Glen Cove High School junior should be focused on college tours, taking the SATs, playing soccer and generally enjoying being a teen, she has instead had to endure the better part of the school year in the hospital with an undiagnosed condition.
“It’s been a long battle for her,” says Sara’s mother, Ricki Testa.
“She spent Thanksgiving Day, Christmas Day, New Year’s Eve, Valentine’s Day, and the day of the junior prom in the hospital,” says Rose Iannelli, a family friend whose daughter, Tanni, is a classmate of Sara’s.
Sara suffered a “presumed” brain stem encephalitis which has affected her vision and her ability to eat or even to swallow food, though the cause of her illness is still unknown, and therefore, difficult to treat.
“It’s been really bad...we thought we were going to lose her,” says Iannelli.
“Her own body is attacking the brain stem,” says Ricki.
Sara was an All-Conference soccer play for the girls varsity team last fall, and was healthy until November. Then she suddenly started having headaches and went to the hospital for the first time with a migraine. Since then, things got worse, with symptoms including the inability to open her eyes, move her limbs or swallow food.
Sara has had numerous MRIs, a blood transfusion and while she has just returned home again, she does require a feeding tube. And according to Iannelli, the ongoing treatment costs include physical therapy and new eyeglasses in addition to the hospital bills.
To add to the family’s woes, Sara’s father has been out of work for more than a year.
“Things have been tight here,” says Ricki. “We lost our insurance and had to go on Medicaid, and a lot of her doctors don’t take Medicaid.”
On a recent Sunday, Iannelli and other supporters were outside of the Glen Cove Bagel Cafe asking for donations and trying to raise awareness about the struggle the local girl is going through. To date, their efforts have raised $4,800, and they are continuously looking for new ways to raise funds.
Kicks For Sara, an event sponsored by DECA and organized by Tanni Iannelli and Rosa Pangari, will take place at 3 p.m. on Friday, May 16, in the high school gym. The admission to the kickball tournament ($4 to play, $2 to watch) will go toward raising funds for the Testa family. They will also be selling soccer balls.
“Her dream is to play college soccer,” says Ricki.
And, while the 17-year-old is currently only attending one class at school every day and is mainly home schooled, Rick says, “She is forging ahead, pushing herself...she’s a very strong girl. The things she went through, I don’t think any child could survive.”
The family has been to hospitals all over the state and is currently trying to get into a children’s hospital in Pennsylvania in hopes of getting a diagnosis. Ricki says Sara even had a spinal tap and vial sent to Barcelona, Spain, but they have still not gotten a diagnosis. She says their goal is to get to National Institutes of Health (NIH).
A profile has also been created for Sara on www.youcaring.com. Those interested in contributing can visit the site or attend the kickball tournament. They are aiming to raise $150,000 by next February.
“We’re crossing our fingers and saying our prayers that this will work and we’ll find the antibodies to fix her,” says Ricki.