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If Ukraine were to present a Volunteer of the Year award, it would be impossible to imagine a more deserving candidate than Zaporizhzhya’s twenty-three year old Ira Gavrisheva. Though tied to a wheelchair and suffering from misdiagnosed myasthenia gravis and breast cancer, Ira devotes long hours to advocating for patients’ rights and to helping children in the Zaporizhzhya Regional Children’s Hospital’s oncology unit. As she wrote in her “Memories,” “in 1997, my life split into two parts: ‘before’ and ‘after.’ I’d spent three weeks in the oncology unit. “From that time on, I knew my life would never be the same.”
“… maybe I survived that hell,” she wrote of the three years she spent in this oncology unit “so that I could help people understand the world in which hundreds of Ukrainian children live: a world full of fear and sorrow but also of hope and faith, and to challenge the public to look beyond mere statistics at the children’s lives those numbers represent. Maybe it was done so that many years later I could tell healthy people that hell exists, that it’s here on earth, in the oncology unit of a children’s hospital. … In these memories I have tried to record the moments that I remember best: moments that impressed me and moments that shocked me -- moments I had kept silent about for seven years because I lacked the strength to relive them.”
The impact on Ira of the following excerpt will be obvious to all who read it.
Translated from Russian by Natalia Guzenko and
Edited by Anne Linden
A bald five-year-old boy ran into the room. “Mom,” he asked, “are we doing the IV today?”
“No, Anton,” his mother replied, looking down at her feet.
“That’s great!” replied Anton. “Does that mean I can go play with the guys?”
“Yes, son. Go,” his mother told him.
The boy left and his mother burst into tears. His skin and the whites of his eyes had turned light yellow. Anton had Hepatitis C, contracted in the children’s hospital’s oncology unit. Any infection could prove deadly for children with cancer and Hepatitis C can be fatal even for children who are otherwise healthy.
In order to eliminate deadly toxins from his liver, Anton had to take more than three bottles of glucose daily through an IV. That meant his mother had to buy 3 bottles of glucose, an IV kit and two syringes every day. Two bottles of solution and one syringe were lying on the windowsill.
“Where is Anton?” asked the nurse as she walked into the room. “We’ll be doing his IV now. Where is his IV kit?” she asked, as she glanced at the items on the windowsill.
“Luda, I don’t have one” Anton’s mother confessed, “and I don’t have any money with which to buy one either. Look,” the woman took her purse from under her son’s pillow and opened it. There was a picture of Anton, tanned and cheerful, sitting on a swing. The picture had been taken six months earlier, the month before his nose had bled for the first time. Other than that, her purse was empty. Nadya had spent all the money she had left for the syringes lying on the windowsill.
“I’m sorry,” the nurse explained as she headed for the door, “but without the IV kit, we won’t be doing the transfusion today.”
Nadya was holding her empty purse in her hands. Anton was her only son. She’d never seen the child’s father after telling him she was pregnant. When her son was diagnosed with neuroleukemia, there’d been no one around to help. His first chemo treatments had wiped out her savings. From then on, they’d had to choose: food or medicine. For months, they’d been living on foul looking hospital porridge. Then came a day when there was no money for medicine. Not even enough for IV kits. Nadya turned her purse upside down. A single coin fell to the floor: a nickel. Nadya held the coin thinking, “Today’s treatment would have cost $!0.00 but all I had was a nickel.”
“Mom, what’s that in your hand?” Anton was peeping through a partially opened door.
“Money,” she replied, smiling ironically. How could anyone call a nickel money?
“Would you give it to me?” Anton asked, reaching out his hand. Once he’d had a coin box. He’d been saving up for roller blades. But the coin box had been his disease’s first victim. Instead of buying roller blades, he’d bought syringes and antibiotics.
“Here,” Nadya said, handing him the nickel. She almost reconsidered. What if she found a hryvna and would need only this nickel to buy an IV kit?
Mom “What can I buy for a nickel?”
“A box of matches,” Nadya answered smiling. Then, once he was out of earshot she continued. “So I can set this hospital on fire and solve the problem once and for all. Of what possible use is a hospital if I, and dozens of mothers like me, have only one lousy nickel.”
In 2006, in order to increase the life expectancy of children like Anton, Ira and Albert Pavlov formed the Happy Child Foundation (www.deti.zp.ua). Seated, as she so often is, in her room next to her computer, Ira devotes hours to searching the Internet for people willing to provide medicine and equipment desperately needed by the oncology unit’s critically ill children.
That does not mean, however, that she doesn’t visit the hospital. She does -- even if it means her father must carry her up to the hospital’s fifth floor. The only elevator serving the oncology unit is too small for a standard-sized wheelchair. Even worse, it breaks down regularly. Not long ago, representatives of the local media arrived to do a story about the unit only to find the elevator down. They walked up.
Kristina P., small orphan patient of Zaporozhye children's oncology ward, 2007
Although much improved since she and Albert became involved, the unit’s conditions remain unconscionably bad. Each hospital room has just enough space for four child-sized beds. These might be adequate if the hospital were adequately staffed. But with only one nurse to care for 25 children at night and not that many more during the day, one parent -- usually the mom -- must remain with her child at all times. As though the stress were not enough to cope with, the moms have no place to sleep except with their children, no place to do any cooking or to buy food ready-made and no place to rinse out clothing -- often for months at a time.
Although Ira doesn’t visit the hospital nearly as often as Albert, she still goes in about once a week to visit with the children and their mothers and to assess the unit’s needs. So far, in addition to regularly supplying medicine, Ira and Albert’s Happy Child foundation has been instrumental in obtaining four Braun volumetric infusion pumps, two computers, and a refrigerator among other things.
Today, one of their main concerns is relocating the unit. Not only does it need more space both for children and their moms, but it needs space closer to Intensive Care (ICU), space where children’s lives no longer depend on a frequently malfunctioning elevator. For information on how to make a donation, go to Happy Child’s website: www.deti.zp.ua