Miqtë tanë të Jackson Friends Church na kanë mundësuar që ju të dërgoni donacionin tuaj për ne online dhe nëse jeni në Amerikë, i zbritshëm nga taksat! Merrni një moment dhe dhuroni për ne sot!
My message to all parents is to invest in your child's future so that they will be enabled for everyday life. This affects your life quality and your child's. Happiness is there, where we live everyday! Suela
|
|
‘An extra chromosome is not the end of the world’ - Was the declaration of one mother in the book ‘The
same lake, different boats’.
I remember when they said to my husband that his new born nephew Jonathan that we were all awaiting with
joy and enthusiasm had a genetic problem. My husband Altin called me and said that he was holding in his
hands a letter for further medical tests because they were suspecting that Jonathan had Trisomy 21. We had no idea what that meant we only understood that the genetic defect was not good news at all. We couldn’t share the news with his parents especially after a difficult labor and the joy of a newborn baby boy. Immediately I called a friend of mine that is a doctor and she explained to me that Trisomy 21 was Down’s syndrome. So, briefly, Jonathan has an extra chromosome 21, and in that moment this additional chromosome seemed to me the end of the world! Sparing the details, it seemed that everything was destroyed for us and Jonathan’s parents when we shared the news. Even if I try to write it I am sure that I’ll not find the right words to express the deep desperation that we felt and this without knowing yet what would happen in the future. This was only the beginning. In the coming days John was hidden from other people, he had frequent admissions to hospital, therapy and health care. We definitely had to do something! From readings and information from our beloved friends, who understood our pain, we were surprised to see how much could be achieved by children with Down’s syndrome, although there are many in Albania, we couldn’t see them at all in public facilities. Education was a dream. Our expectations would be satisfied if John could talk and walk alone. Only that could be enough! Oh yes, and not to be sick so often. All this information which we collected by ourselves, almost everything in English, opened new horizons and gave us hope. In March, 2008, together with Annette Van Gorkum, a beloved friend of Jonathan and his family, we began to think about the establishment of Jonathan’s center to offer care for children with Down’s syndrome and comfort for their parents. To help them to sail their boat in our common lake of life, with the same possibilities, with the same rights, and why not with more support in the way that they can understand that one more chromosome can’t take away the beauty of being parents. Above all we dream that these children could achieve as much as possible, as in many western countries, to be an active part of our society, to be accepted and supported from society...to bloom! Not pity, but support! This is all a human being needs.
|