Bogdan Biletsky, born on 7/12/2005
Diagnosis: congenital cerebral palsy with quadriparesis and delay of speech and motor development.
Medical treatment news from Bogdan Biletsky
Medical chart excerpt: page 1 page 2 page 3
Report about the collected donations
Phone numbers of parents and volunteers
ATTENTION (18.11.2014).:
The fund-raising campaign is closed. Little Bogdan has a very busy treatment schedule. As soon as the boy with his mom come back from the rehabilitation course, we will publish some news!
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To present Bodya his first step
Ooh
A communal housing building at the edge of the Southern micro-region. A house on Lunacharsky Street, and the ambulatory clinic of the "Radio Equipment" factory is stuck right behind the house. Further on there is darkness, empty beaches, and the Dnieper river which is already beginning to ice over.
I walk around a big building that looks similar to a ship stranded ashore, not noticing the entrance to the dark entryway at first. On the narrow, barely-lit staircase, a young woman of around 18 meets me - that's Katya, Bogdan's older sister. She leads me up to the second floor. In my peripheral vision, I notice a huge kitchen, dozens of mismatched doors, cluttered, crowded hallway, its walls covered with notices - in one word, a typical dormitory.
But near the doors of a studio apartment all this collective daily life of dozens of people retreats slightly. It does not go past a handwoven braided rug - my grandmother used to make these. It stops at a neat curtain. And even the fluffy cat, who is rubbing his back against an elaborate, complex-shaped baby carriage, for a moment seems to stop being a dormitory cat and appears to exude a homelike coziness. Here, at the door, Neonila, Bogdan's mother, meets me and immediately asks me to simply call her Nelya. I ask her to call me Maxim. We both laugh and enter the apartment. The small room contains a sofa, a wardrobe, a dinner table, a computer, a ladder and some complex sports machine. And photographs. Photographs and drawings. There are a great many of them in the room - on the walls, on the carpet, in the photo frames.
"Bodya is very fond of having his photo taken," Nelya explains. "I told him today too, that he's going to have his photo taken. He's really been looking forward to it...He's been really excited about it for the last 20 minutes."
Bodya is not able to walk, and therefore greets me while lying prone on the couch. He is so glad to see me that I even begin to feel a little embarrassed - I don't feel that there's anything in me that could cause such joy.
I take off my jacket, pull out my notebook, turn on my recorder, sit down and ask her to tell me Bodya's story from the very beginning. Apparently, Bodya also likes stories, and, therefore, immediately climbs into his mom's lap.
"My water broke, and the ambulance took me to the Third L&D Hospital. The water broke, but the labor wouldn't start," Nelya begins. "The process was a very lengthy one, and they ended up doing a Caesarean...That's how Bodya was born."
"Ooh," says Bodya happily, hearing these words.
"But his lungs didn't expand properly, and we were placed in a hyperbaric chamber immediately. We stayed in the NICU of the Fifth Children's Hospital, and then in their baby unit. We actually got born on December 7th, but it wasn't until January 14th that we got home.
Until three months, Bodya was developing normally, and then...
Small victories
"All his muscles were horribly hypertoinic," Nelya continues. Just like most mothers, she says not "he" and "his", but "we" and "ours", not separating herself from her son. "The arms were clenched together, the legs were drawn up together. It was quite a job, getting him dressed."
"Oh!" says Bodya happily, as if hinting that the job was quite a major one. And Nelya falls silent for a moment.
"It took me a long time to realize that this was really happening, and that's why I didn't file for disability for an entire year, even though we were told about the cerebral palsy right away..."
When Bogdan was one year old, his family started taking him to see a chiropractor in Simferopol. Viktor Dmitrievich Tishin, who was recommended to the Biletskys by a family who ran into a similar problem, after two sessions, ten days of massage, and a course of homeopathy enabled the boy to sit and 'activated' his hands. Thanks to this, Bogdan is now able to feed himself and even show me photos - Nelya had gotten a whole stack of them ready. They show Bodya as a baby, surprised by something, and as a preschooler, wearing glasses and looking mischievous, standing with his sister's help.
"When we were three years old, we went to a neurology clinic in Donetsk. At the time, Bodya could not even crawl properly. But after a course of massage, acupuncture, and other procedures, we started crawling on all fours."
I inwardly smile at this yet another "we", and Nelya continues. She is telling me how difficult it is to get a voucher for a therapeutic resort treatment for children with cerebral palsy (and even if one does get a voucher, it only covers the child's stay - the mother's stay, which costs five to six thousand hryvnyas (600-725 US dollars), one has to pay out of one's own pocket). She tells me about financial problems - Nelya himself isn't able to work, and her husband Zhenya, who works shift work, can't go looking for a higher paid job with longer hours, because Bodya has to be taken to physical therapy and to aquatic exercise sessions several times a week. Incidentally, the daycare he goes to is special as well. Its unofficial name is "The Planet of Happiness", and officially - a charitable organization, Zaporozhzhey Center of Socialization and Rehabilitation of Children with Special Needs. The regional rehab center daycare wouldn't accept Bodya because he can't walk - he has to be carried, and so a few parents had to get together, pool their money, and open up their own daycare, that would accept all children...
A screwdriver, a hammer, and the Patriarch Kirill
"Mommy! Mommy!" Bodya interrupts Nelya. Nelya listens closely to his babbling for a few seconds, then gives him a toy laptop.
Communication between mother and son is another topic: even though Bodya has difficulty speaking, he tries to say a great many things. He does that in a very peculiar way. I will give you an example. Bodya's favourite things to do are fixing something, using a screwdriver and a hammer, and...to listen to Father Kirill's sermons via computer. The screwdriver and a hammer don't surprise me - I myself was always playing with Legos till about the age of 10, but I ask Nelya for some more detail about "Father Kirill".
"It was an amazing thing. On July 28th, on the National Day of Baptism of Russia, there was a direct broadcast from Vladimirskaya Gorka to Kiev. We were visiting somebody. We were about to leave their house, I went up to Bodya to get him dressed, and he was simply glued to the TV - a large, bright plasma screen. We came home, and he was telling me something, demanding something, and rubbing his chin, and I could not figure out what he wanted. Then I finally realized - that was his way of indicating the priest's beard. I found him a recording of that prayer service, and that was it, that's the only thing he wanted to watch ever since."
"V-v-v", says Bodya, as if to confirm, that yes, that's the only thing, and crawls over to his sister's lap. Nelya and I then start discussing the most important topic - Bodya's treatment in Russia, which is scheduled for mid-February.
Eight steps
At this time, the inability to walk is one of one of Bodya's main problems. The boy is growing, becoming stronger and more mobile, but because of the malformed ankles and knees, he isn't even able to stand by himself.
And the situation can still be corrected, it's not too late yet. And one doesn't have to go far abroad to do that, either. The Turner Research and Treatment Children's Orthopedic Institute, which is situated near St. Petersburg, in the city of Pushkin (Russia), can help. This institute is the first and only research and treatment institute in Russia, which has been involved in providing help for children with orthopedics and trauma for the last 75 years. Unfortunately, in Bodya's case, surgery would be necessary.
"At this time, a girl who's already had the surgeries Bodya is scheduled to have, is able to take 8 steps in the pool by herself," Nelya says. Such an ordinary thing for any of us, these eight steps seem like a true miracle to her. "We've been putting it off for so long, the amount of money necessary has seemed unaffordable...I have to be pushed into things like this. But, again, the experience of our acquaintances has proved it is possible, and that's why we decided to go ahead. Bodya's growing taller every day."
At the beginning of November, Boday’s family went to Pushkin. Incidentally, for them to be able to take the trip, the "Happy Child" Foundation had provided and paid for a special 'social taxi' round trip. As a result, the trip cost them several thousand hryvnyas less than it would have otherwise.
"They examined Bodya from head to foot," Nelya recalls. "They scheduled him for two surgeries. He has to be admitted to the hospital for two weeks prior to the first surgery. And there will be a long period of rehab afterwards."
The hospital admission is scheduled to start on February 10th. An entire group of specialists is going to convene to deal with Bodya's case. Therefore, the family has less than two months to raise 38 thousand hryvnyas (4,600 US dollars). All the savings they had were spent on the first trip to the hospital.
If everything goes according to the plan, the boy would be able to take his first step by the next new year. And he will say his delighted "Ooh!"
It's very easy to help him in this.
The family lives in the city of Zaporozhzhye.
The telephone number of Bogdan's mother, Neonella Nikolaevna Biletsky, is +38 095 722 90 14.
You can also obtain additional information from the staff members of the "Happy Child" Foundation.
