I am Xenia Woyevodsky, Secretary/Member of Parish Council of St. John the Baptist Russian Orthodox Cathedral in Washington, D.C. We have known little Nadia and her remarkable family since their arrival in the U.S. in March 2011. Nadia and her family have become an integral part of our parish community. Our parish has supported them in every way possible and has raised funds to help them with their outstanding medical bills and needs. The original $100,000 raised in Russia has been spent. The wide-ranging medical expenses including chemotherapy, rehabilitation and physical therapy, urgent dental procedures and drugs etc. are enormously high. The family has no personal income to cover these costs. Nadia's father, Afanassy was able to work part-time but since Nadia's stroke -- compounded by her spine and bone fractures and her many inpatient hospital stays -- she requires constant supervision. She is much too heavy and fragile to be lifted by her mother and so it falls entirely on Afanassy who has had to cut back considerably to remain by his daughter's side. During her inpatient hospitalizations, Afanassy always stays in the room with her in order to alleviate Nadia's psychological fear of strange places intensified by her blindness and a low comfort level in English. At the same time, her mother, Alexandra is caring for the needs of the couple's other two children, a toddler and an infant, between daily visits to the hospital to nurture Nadia with the other two children by her side.
There is still hope for this brave young girl at Johns Hopkins University Medical Center in Baltimore but it will take more time and a great deal of money to help save her life. We cannot do it alone. We urgently need the support of many more generous, compassionate people who share our belief that all children are children of God and deserve a chance to live a normal healthy life. For "in seeking happiness for others, we find it for ourselves."
Nadia "Zlata" Chernoknyzhnaya was born in St. Petersburg, Russia on June 12, 2006, a beautiful, happy and seemingly healthy baby. At 7 months, her mother detected some vision disturbances which were subsequently diagnosed as optic nerve gliomia, a rare brain tumor found in children. At age two, Nadia underwent surgery to remove the tumor. Unfortunately the surgery was not fully successful and caused her to lose her sight. Little Nadia and her family had to learn to adapt to her new situation and to live with her disability. She learned to read braille. She loved to draw, studied English and played musical instruments. She learned to use her senses and tactile skills to engage in her natural surroundings -- the sounds, the scents, the feel of grass, flowers, animals etc. Her biggest dream to this day is to be able to see the sun!
The doctors in St. Petersburg did everything possible to help Nadia, including a second surgery. But sadly, at age four, Nadia's condition returned and the family began to set their sights on John Hopkins University Medical Center in Baltimore, MD specializing in this form of cancer. The operation alone would cost $100,000. Additional funds would be needed for follow-up treatment and chemotherapy along with the cost of airfare to the United States. Money was raised by Russian television's Channel One broadcasting the plight of the little girl throughout Russia. Donations to help save Nadya's life came fast and furiously from people of all walks of life; many anonymous contributions. In March 2011, 4-year old Nadia and her family arrived in Baltimore for the next phase of her path to recovery -- a difficult road, full of excruciating pain and suffering and heart-wrenching clinical death episodes and setbacks.
In summer 2015, Nadia suffered a major stroke and was in a coma for over a week. Nadia survived and was transferred to a local rehab hospital for a long and grueling rehabilitation process to restore motor and functional activities (chewing, swallowing, speaking, walking). The physical therapy that she had to endure was extremely painful, leaving her often to cry out like a wounded animal because she could not explain in words the pain she was enduring. Consequently, she sustained injuries and fractures to her spine. Her bones have become very brittle and she is suffering from a form of osteoporosis. Lifting her from the bed to a wheelchair is a very painful and arduous process. In order to begin treating her osteoporosis, it was critically important to first correct the disintegration of her teeth caused by chemotherapy so that the infection in her mouth would not lead to further complications. Everything is interconnected. And so Nadia recently underwent yet another difficult and costly procedure -- dental treatment under anesthesia.
Nadia has regained some mobility and speech. In the words of her mother, Alexandra, " hormonal therapy and chemotherapy has transformed Nadia into a heavily bloated, worn-out and tormented adolescent much older than her years, and yet she is only 9 years old! She has spent the past 9 years of her life in hospitals and in a continuous struggle to overcome extreme pain and suffering. It isn't possible to recognize our little fragile, vibrant Naden'ka in this huge and exhausted body. And yet we know, that deep inside there lies our little baby daughter!"
- Olga Schmidt
Organizer and beneficiary
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