Bela Kafengauz & Alexander TzetlinWe are Bela Kafengauz and Alexander Tzetlin, we live in Moscow and represent PRISMS in Russia. Our eldest daughter Sophia was born in 1984, at the time when Smith Magenis Syndrome was yet to receive it’s name. When Sophia began to develop atypically, no one could tell us what was wrong. We were seeking help from numerous specialists up until 1997, when we were able to send her blood sample for FISH analysis to Canada. Most likely, Sophia was the first person diagnosed with SMS in Russia.
Sophia is 35 years old now. She lives with us, she can read, write, uses computer and smartphone. She is very sociable and her biggest hobby is talking to other people and learning more about their lives. Sophia keeps herself busy – she can talk on the phone, watch TV and listen to music all day long.
Being the first family on the way of raising and educating a child with SMS in Russia was not easy. We wanted to share our experience and make it easier for others. Bela wrote a book about our daughter’s infancy and her preschool and school years, and difficulties that our family had confronted. The book was published in 2008. Later in 2010, we created a website about SMS in Russian http://smith-magenis.ru/ . Over the years a Russian SMS community has gathered, consisting of the Russian families and professionals interested in this syndrome. We are proud to represent PRISMS in Russia and be of help for families like ours.