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Close to Sochi, Boy is Saved by Loving Down Syndrome Community

Russian Family Flies to Germany for Life-Saving Heart Surgery

Sometimes, in our compassionate, close knit Down syndrome community, it doesn’t just take a village to care for a child, it takes a global village.

On May 30, 2012, in Stavropol, Russia, not far from Sochi, where the Winter Olympics are underway, Dasha and Alexey Garafonov gave birth to a son, Peter, who has Down syndrome. Today, the Garafonovs are getting on a plane to Germany, where Peter is scheduled to have a life-saving surgery on Feb. 25, 2014.

While things are looking up for Peter, says Marc Epstein, an MDSC member who has gotten involved in several international cases like Peter’s, it’s sadly not the norm for the vast majority of children like Peter.  “When a child in Russia is born with Down syndrome, doctors urge parents to place them in the state’s care, which means they will go to orphanages and eventually be placed into mental institutions to live out the rest of their lives. Most families make this choice since they feel unequipped to deal with the diagnosis. There is also a stigma about persons with special needs in Russian society due mostly to ignorance, but which causes most families to give up children born with disabilities.”

Against all odds, Peter seems to be heading on a different path. The journey starts in 2011, when Peter’s aunt Evgeniya and her husband met an American couple, Vashti and Glenn Walters, from Knoxville, Tennessee. The Walters had come to a Russian orphanage to adopt a 4-year-old boy with Down syndrome named James Ivan, who had been given up by his parents. Barring his adoption, James would have aged out the orphanage for young children and his life would almost certainly become much darker. As it was, he was saved from that fate.

When Peter was born, Evgeniya, who had remained in touch with Vashti by email and Facebook, immediately reached out to her American friends. Both of them were grateful that Dasha chose to keep her son. “I admire Dasha's bravery, even though I've never spoken to her due to the language barrier,” Vashti says.

Still, Peter was hardly out of the woods. Having been born with a congenital heart defect, doctors in St. Petersburg said that his life threatened unless he had surgery. As is often the case in other parts of the world, the hospital denied the life-saving surgery because Peter had Down syndrome. Unwilling to give up, Dasha scoured Russia looking for a solution. Eventually, she sent Peter's medical documents to doctors in Germany - who agreed to perform the surgery, but could not cover the $50,000 price tag, not including travel and living expenses for what would have to be a month-long stay.

At that point, just as there seemed no hope, Vashti began doing her own networking, desperately searching for an individual or organization that could help. In November 2012, she met Dr. Brian Skotko, co-director of the MGH Down Syndrome Program and chair of the MDSC’s Medical & Scientific Advisory Council, who had come to Knoxville on a speaking engagement.

Dr. Skotko in turn put Vashti in touch with his friend Marc Epstein, an active member of the Massachusetts Down Syndrome Congress and our Dads Appreciating Down Syndrome (D.A.D.S.) affiliate. Marc, whose son Paul has Down syndrome, has a track record of identifying funding sources for life-saving medical care for children with Down syndrome. With Marc’s help, Dasha was put in touch with a Rusfond, a Russian charity organization (www.rusfond.ru) that after a long, grueling process, chose to provide Peter with funding to cover his heart surgery expenses.

For months, the family anxiously awaiting a date of departure for Germany.  For Marc, he is glad that Peter’s story has a happy ending. “When I hear how children with Down syndrome are just discarded in other cultures, it first upsets me, then I get mad, and then I try to find a way to do something about it.”

But he also knows that so much more needs to be done. “The number of children we are able to help is such a small number compared to the number of them that need our help.”

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