In Albania, the Church Is Overturning Down Syndrome's Stigma
Image: Cydil Waggoner

As a Christian, Ada Kita of Tirana, Albania, wanted to find a way to demonstrate the compassion of Jesus to her city. Initially, she considered founding a program for the thousands of children living on Tirana’s streets. Eventually, though, she and her husband, International Church Fellowship (ICF) pastor Altin Kita, found insight into a forgotten population in an unexpected place: their own family.

In 2004, Altin’s sister Valentina gave birth to her son Jonathan, a child with Down syndrome. In Albania, if parents discover their child will have Down syndrome prior to birth, medical professionals encourage abortion or provide information about planning for the child to be raised in an orphanage. When parents like Valentina keep their children, they have little or no financial, emotional, and instructional support.

“My sister was heartbroken,” Altin said, recalling his nephew’s diagnosis.

In 2008, however, with help from ICF Tirana, Ada and her friend Annette Van Gorkum of the Netherlands co-founded the Jonathan Center: Albania’s premier organization for development, care, and advocacy for individuals with Down’s and their families. Together, they are changing how people in Tirana and other cities in Albania view children with Down syndrome.

‘The Children Are Not Seen as Worthy’

Altin admitted that before Jonathan was born, he didn’t even have words or a name for Down syndrome. He knew that something was different, but he didn’t know why or how to interact with people with Down’s—it was so rare to see them out and about. Even discussing the subject was taboo.

Ada blames the vestiges of communism for the pervasive, negative attitude regarding Down syndrome. Although there’s superstition in the villages about the syndrome being a punishment or bad omen, Ada said it’s an institutionalized prejudice that often begins with how health care professionals in the city communicate to parents and patients.

“The children are not seen as worthy of anything,” Ada said.

Following Jonathan’s diagnosis, Ada searched online for resources on caring for her young nephew; however, most of the information was written in English, and there was also no infrastructure to implement the therapies suggested. Creating a good life for Jonathan seemed almost impossible. But as Ada helped Valentina and Jonathan, she found they weren’t alone in their struggles.

In 2005, meanwhile, Annette Van Gorkum traveled from the Netherlands to Albania with a Christian outreach group. During her visit, Van Gorkum recalled seeing a man with Down syndrome, whom she guessed to be about 20, begging for money on the street in Tirana. She didn’t see a reject; she saw a strong person with potential who wasn’t being given a chance to participate in a society that ignored his humanity.

While working in Albania, Van Gorkum and Ada met and shared each other’s concern for the future of Albanians with special needs. Neither of them had experience with advocacy or training in the subject, but they both recognized an avenue for service.

“When you hear the stories about the children, your heart cries,” said Van Gorkum.

After conducting a survey of local families, Ada found all the information she needed to direct her energies in meeting the community’s needs. Families with children with Down syndrome shared that they weren’t accepted by their neighbors and didn’t know how to help their children succeed.

November
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In Albania, the Church Is Overturning Down Syndrome's Stigma