Ardita moves through the gym during Family Fun Night at Elvehjem Elementary in March.
Ardita Bilalli has been called a miracle child. After her premature birth, in war-torn Kosovo, she came to the United States in 2001 seeking medical treatment for a spinal condition. She was two years old.
After receiving treatment in Chicago, Ardita came to Madison; she's attended Elvehjem Elementary since early childhood. Now age 10 and in the fifth grade, Ardita suffers from spina bifida, among other serious health problems. She uses a wheelchair and is often in pain.
"I've cried a lot, and it's been hard," says Ardita, who over the years has had nine major operations. "There have been many surgeries, but it's fun here, and I've been with some really nice people."
Now Ardita faces what could be her toughest challenge. At the end of the current school year, she must return to Kosovo, where her future is less secure. She and her mother, Shemsije, have twice extended their visas to allow for Ardita's continual medical care, but have been denied further refuge in the U.S. They worry that Ardita may not be able to get the medications and care she needs in Kosovo.
"I just wish she could get the documents to stay," says Shemsije. "I wish there was another way."
Ardita and her mother came to Chicago in 2001 with the help of a Madison-based uncle, Gani Ahmetaj. He arranged for her to receive treatment at Shriners Hospital. Ardita's father, Sami, has remained in Kosovo, having been denied permission to leave. Says Shemsije, "My husband has tried to come and hasn't been able to."
While Ardita looks forward to reuniting with her father, the village in Kosovo to which she's scheduled to return in June has spotty electricity and unsafe water, which may exacerbate her medical conditions.
But there may be a glimmer of hope. Ardita has won the hearts of her classmates in Madison, and a group of concerned moms at Elvehjem Elementary School are taking up her cause. They have contacted lawyers and international experts and are now raising funds to ensure that Ardita has a fighting chance when she heads home.
Ardita's uncle Gani Ahmetaj moved to Madison from Chicago in the late 1990s, after reading an article proclaiming Madison the best place to raise a family. Sitting on a sofa in his modest east-side home, he recalls clutching at any news from his home country as the war raged on.
"For six months, I didn't know if they were alive or not, or what was happening," Ahmetaj says. "I talked to my mom and she said everything was fine except my newborn niece - it looked like she had problems with her bones."
Local doctors first attributed the baby's evident pain to the fluctuating weather. But eventually doctors in Pristina, the capital of Kosovo, diagnosed her as having spina bifida, a birth defect that exposes her spinal cord to infection. The disease has led to numerous complications, including an abnormal buildup of cerebrospinal fluid in her brain. Ardita remains vulnerable to infection and gastrointestinal conditions but is described by her peers as intelligent and loving.
Ahmetaj owns the Prime Table restaurant on Monona Drive near his home. He says he's relied on his regular customers, who make up 70% of his business, to get him through tough times.
"They aren't just customers, they have become part of my family," Ahmetaj says of those who have pitched in to offer advice and support for his family of six, plus Ardita and her mother. (For instance, it was one of his customers who put him in contact with the Shriners in Chicago.)
Ahmetaj was dumbfounded in September when a ruling came down denying Ardita's father, a construction worker, entrance into the U.S.
"I can't understand it - [his wife is] here. I'm paying for the house, medicine, food, everything," Ahmetaj says. "If he came he would work hard, he would pay taxes, he would appreciate everything this country has, and save this kid."
Separately, Ardita and her mother got word that their visas would not be extended and that they would have to return to Kosovo. Ahmetaj, a legal permanent resident, is heartbroken by these developments and says he will feel terrible guilt if Ardita's condition were to worsen when she returns.
"What are we going to do?" asks Ahmetaj. "To bring him here won't work. To stay separated isn't working. Are you supposed to give up on someone you love?"
The answer from Ardita's classmates and others in Madison is a resounding no.
Kelli Betsinger, a parent of another child at Elvehjem, is leading the charge to locate aid for Ardita, from groups like Doctors Without Borders. The girl will be returning to a small village named Shtutica, two hours away from the next largest city, making medical care even more difficult.
"Her life is here," says Betsinger, adding, "Everyone knows there are not good opportunities for her back there."
Ardita's classmates are also pitching in. At a Family Fun Night in March, they raised more than $600 for Ardita to put toward solutions when she returns home.
At Elvehjem, Ardita has flourished. She's been a popular and active member of the small school.
"She's just a great human being," says Craig Campbell, the school's principal. "She's never down, and she never thinks about herself. It's always about what can she do to help."
Ahmetaj says the medicines his niece needs to survive will be extraordinarily expensive, if not impossible to find in Kosovo. He also worries she could spend the next two years catching up in an Albanian school, since she has grown up speaking English.
Shelly Trowbridge, another family friend, hopes the Madison group can raise money to provide medication, and possibly transportation to an English-speaking school.
"We're searching for any leads, looking for any type of connection that might help them," she says. "We have a whole set of teachers trying to locate leads that will make her life sustainable. While we're optimistic that the community can help, we can't deny the cold hard truth that time is running out."
The group has set up a website at HelpArdita.com and a fund at Associated Bank on Cottage Grove Road. The site's motto is "The Power of One...one community, one family, one little girl."
What you can do
Donate to the fund at Associated Bank.
Email any information to firstname.lastname@example.org.