I remember like now when my husband was told that his newborn grandson, Jonathan, whom we were all waiting for with such joy and enthusiasm, had a genetic problem. My husband, Altini, calls me and says that he had a letter in his hand for further tests where it was suspected that Jonathan had Trisomy 21. We had no idea what it said, we just understood that the genetic defect was not good news at all . We couldn't even share the news with our parents, especially after 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, in fact, this extra chromosome seemed 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 it, I'm sure I won't find the right words to express the deep despair we felt, and this without knowing what awaited us. This was just the beginning.
What followed was John's hiding from people, frequent hospitalizations, therapy and professionally crippled medical care. We had to do something! From the readings and information from loved ones who understood our pain, they were surprised at how much children with Down syndrome could achieve, which, although numerous in Albania, we did not even see in public spaces. Education was a dream. Our expectations would be satisfied by the fact that John could talk and walk on his own. That alone would be enough for us! Ah yes, if only he didn't get sick so often.
All this information that we collected ourselves, and almost all of it in English, opened new horizons and raised many great hopes. In March 2008, together with Annette Van Gorkum, a dear friend of Jonathan and his family, we started thinking about establishing the Jonathan Center, to provide care for children with Down syndrome and help for their parents. After months of research and contact with parents, in November 2008 the Jonathan Center organized the first meeting of the group of 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 all the worldwide organizations in the petition to the United Nations, that March 21 is known as World Down Syndrome Day and so it happened, March 21, 2011 marked the first time that this day was celebrated in Albania , under the direction of our organization.
Our services consist of speech therapy, developmental therapy, physiotherapy, music therapy and art therapy, which are applied individually or in groups, support for the construction of the Individual Educational Plan for children who are in schools, trainings and conferences for parents and professionals, literature , counseling and medical care. For years now, we have been developing fine motor therapy by making postcards and paper frames, which have subsequently been a powerful awareness tool and source of income for our organization. We are proud today of a multidisciplinary team of experts and hundreds of volunteers who have contributed with love and zeal to our activities. We have served over 230 Albanian families from Tirana, Berat, Durrësi, Lezha, Burreli, Puka, Shkodra and Kavaja, that's why we know that Jonathan is God's gift to all Albanian families who have a child with Down Syndrome.
Oreada Kita
Executive director
