I still remember the moment when my husband was told that his nephew, Jonathan, whom we had all been eagerly waiting for with so much joy and excitement, had a genetic condition. My husband, Altin, called me and said that he had a letter in his hand for further tests, and it was suspected that Jonathan had Trisomy 21. We had no idea what it meant; we only understood that the genetic disorder was not good news at all. We couldn’t even share the news with our parents, especially after such a difficult birth and the joy of having a boy. I immediately called a doctor friend of mine, and she explained that Trisomy 21 was Down Syndrome. In short, Jonathan had an extra copy of chromosome 21, and at that moment, this extra chromosome felt like the end of the world to me.
I won't go into detail about how everything seemed to fall apart for us and Jonathan's parents when we told them the news. Even if I try to write about it, I’m sure I won’t find the right words to express the deep despair we felt, especially without knowing what awaited us. This was just the beginning.
What followed was John's withdrawal from people, frequent hospitalizations, therapy, and inadequate medical care. We had to do something! Through readings and information from loved ones who understood our pain, we were surprised by how much children with Down syndrome could achieve. Although there were many in Albania, we rarely saw them in public spaces. Education seemed like a distant dream. Our expectations were simple: if John could talk and walk on his own, that would be enough for us. Oh, and if only he didn't get sick so often.
All this information we gathered on our own, much of it in English, opened new horizons and raised great hopes. In March 2008, together with Annette Van Gorkum, a dear friend of Jonathan and his family, we began thinking about establishing the Jonathan Center to provide care for children with Down syndrome and support for their parents. After months of research and contacting parents, in November 2008, the Jonathan Center organized the first meeting for parents of children with Down syndrome! In June 2011, we were registered as a non-profit organization, and in December of that year, we were accepted as representatives of Down Syndrome International for Albania. In January 2012, we joined worldwide organizations in petitioning the United Nations to make March 21 World Down Syndrome Day. As a result, March 21, 2011, marked the first time this day was celebrated in Albania, under the leadership of our organization.
Our services include speech therapy, developmental therapy, physiotherapy, music therapy, and art therapy, which are applied individually or in groups. We also provide support for creating Individual Educational Plans for children in schools, training and conferences for parents and professionals, literature, counseling, and medical care. For years now, we have developed fine motor therapy through activities like making postcards and paper frames. These have become powerful awareness tools and a source of income for our organization. Today, we are proud of our multidisciplinary team of experts and hundreds of volunteers who have contributed with love and enthusiasm to our activities. We have served over 230 Albanian families from Tirana, Berat, Durrës, Lezha, Burrel, Puka, Shkodra, and Kavaja. This is why we believe Jonathan is a gift from God to all Albanian families with a child with Down Syndrome.
Oreada Kita
Executive Director
