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Ilya Sleeps Better Thanks to the DSOS, Children-at-Risk Program in Moscow
Like most eight-year-olds, Ilya loves riding her bicycle. She dotes on her old cat, Topa, likes to talk about typical "kid stuff," and has a particular affinity for Mickey Mouse. But unlike most of her peers, physical illness hampers her studies and healthy social development.
Born with a rare disease known as Phenylketonuria (PKU), Ilya has been disabled since her earliest days. PKU is a genetic metabolic disease caused by a deficiency in a vital enzyme. This deficiency results in mental retardation, organ damage, and posture problems, among other challenges. The illness, which strikes 1 in 10,000, forces Ilya to maintain a highly restricted diet with an extremely limited protein intake. Even a slight misjudgment can have devastating, irreversible consequences on her health. Fortunately, Ilya is surrounded by love; she is being raised by her mother Elena, and her grandparents, in two rooms of a three-room communal apartment in Moscow that they share with a neighbor. "We will always do everything we can to help her," says her mom. Despite the modest conditions, Ilya does not ask for anything more. Her smile is authentic and belies her personal circumstances. Still, while Ilya lives in a supportive environment, her situation remains an ongoing challenge. Even on three pensions – totaling some $400 – Ilya’s family lives below the poverty line. Ilya’s father, who has been divorced from her mother for years, provides no assistance to the young girl, who was sleeping on an old ragged sofa until a new fold-out bed was purchased for her with help from the JDC-sponsored Children’s SOS Fund. "Now my daughter sleeps comfortably on a new sofa, and her back no longer aches," says Elena. The SOS program, which is part of JDC’s activities with at-risk children in the former Soviet Union, responds to urgent needs – such as food, medical procedures, and clothing – for the region’s most vulnerable young Jews. Thousands of children each year benefit from one-time SOS emergency grants to ease their burden. Over the past year, nearly 900 children per month have received vital assistance through the program. Ilya also started receiving specially-created food packages to meet her dietary specifications. Unfortunately, since even the slightest intake can affect the young girl’s well-being, most of the time she studies at home instead of going to school so that her mother can supervise her eating. Elena, a licensed pediatrician, cannot hold down a permanent job due to her daughter’s illness. Amidst all of their hardship, the family is grateful to have support from the Jewish community. "We often times had to choose between food and clothes or school supplies. With the food assistance from SOS, I was able to buy Ilya new clothes to replace old worn outfits," Elena shares. Thoughtfully, she looks over at her bright-eyed daughter, who plays joyously with her kitty. "We are so thankful to JDC, which cares for us. We don’t have anybody else in the world that can help us." February 2006 |
