Sophia Siletskaya of Nikolayev, Ukraine, was born with an extremely rare medical condition called Shereshevsky-Turner Syndrome (the partial or complete absence of the X chromosome), which is marked by a variety of physical abnormalities and a disruption in normal reproductive development. At just 7 years-old, Sophia’s condition has stunted her growth, as she stood at only 41 inches tall. Her hands and fingers were also constantly swollen, and she struggled with social and cognitive disabilities.
But for the longest time, her genetic abnormality was only one of her many problems.
From the time Sophia was born, her mother, Natasha, struggled to raise her and her siblings on her own. Sophia’s father enlisted in the military and never returned, so Natasha had to work long hours as a nurse’s assistant to provide for her three children, but it was never enough, and the situation grew dire. Overwhelmed by desperation, Natasha neglected newborn Sophia’s special needs.
This neglect was punctuated by an unthinkable episode during which a kidney was stolen from 8-month-old Sophia while she slept in the recovery room at a local hospital. Rapt with guilt, Natasha learned that her infant’s kidney had been sold on the black market for profit. Doctors also informed Natasha that Sophia’s survival was nothing short of miraculous. An infant in her condition should have died after being robbed of a vital organ.
To allay her financial burden, Natasha moved her family into her father’s home, a large but decaying relic from the Communist Era. While he was one of the few fortunate enough to prosper while living under Soviet control, his situation changed drastically after the Soviet Union dissolved, and he spiralled into poverty. Bitter and dejected, he became violent and abusive. With nowhere else to go, Natasha endured the abuse while raising her children in her father’s crumbling home.
When LifeChangers FSU heard about the Siletskaya family’s terrible predicament, they stepped in to give Sophia, and the rest of her family, a chance at a better life.
Due to misinformation, Natasha had never registered Sophia as a child with special needs, so the family had never received the governmental financial aid to which they were entitled. LifeChanger FSU helped Natasha register Sophia appropriately, and they are now receiving the financial assistance and benefits they so desperately needed.
Sophia has the first documented case of Shereshevsky-Turner Syndrome in the Ukraine, so her doctors never knew how to treat her. LifeChanger FSU has been working with a team of medical professionals who are familiar with Sophia’s condition, and they have been monitor her closely and providing her with the latest medical treatments. She is also on steady regimen of hormonal treatments and medication that have put her on the road to living a more normal and healthy life. During her time in the project Sophia grew almost 4 inches!
As for her cognitive issues, LifeChanger FSU created a special resource room at the Or Avner Jewish School just for Sophia and provided her with private tutors who helped her completely catch up with her peers academically. She has now been fully mainstreamed and is even outperforming her peers in certain subjects, such as English. Sophia has made real friends for the first time in her life, and she participates enthusiastically with the rest of the class during learning and activities. She has made positive connections with her teachers, who are impressed with her constant progress.
LifeChanger FSU is also helping Natasha. After connecting her with a great therapist, who is helping her work through her trauma, LifeChanger FSU is also assisting Natasha with her employment search, as she now understands that she can only properly provide for her children is she secures a better job. She is also learning more about Sophia’s condition and how to best care for and support her daughter with special needs. Natasha is now a very involved parents and gives Sophia all of the love and attention she needs to thrive.
Because Sophia’s unique medical condition makes her case especially complicated, LifeChanger FSU continues to keep a close eye on her, making sure that she is receiving the best possible treatment and is provided with every opportunity to grow and succeed socially and academically. Now that Sophia and Natasha are receiving the assistance they require, the future looks bright for the Siletskaya family, reminding us that a few devoted people can drastically change even the most complex situations.