Immediately after his birth, Vova Gumenyuk was admitted to intensive care, where doctors fought for a long time for the newborn boy's life. At four months old, Vova underwent surgery to remove a hemangioma in the parietal region, and at one year old, the child was diagnosed with cerebral palsy. Vova became the most long-awaited child in the world for his parents. He was born at 33 week of pregnancy ((The cause was a superior lateral rupture of the amniotic sac and polyhydramnios). The boy was in the intensive care unit and transferred to the neonatal pathology unit with a diagnosis of IVH 1−2 grade, hypoxic-ischemic encephalopathy, muscular hypotonia syndrome, cervical vertebral subluxation grade C3-C4, pulmonary atelectasis, prematurity 2 grade, neonatal jaundice, hemorrhagic syndrome, risk of intrauterine infection, parietal hemangioma, (and underwent surgery. At 4 months, at neurosurgery).
He began to hold his head up at 7 months, and at 10 months, he was able to roll over onto his stomach for the first time after long, daily Vojta therapy sessions. The baby underwent rehabilitation at the «Future» center, and received massages and physical therapy. At year, the child was diagnosed with cerebral palsy.
Daily exercises became a way of life for little Vova; massage therapists and physical therapy specialists were frequent visitors to the home. At the boy learned to crawl on his belly, on his tummy, and began to form his first syllables: «ma-ma», «pa-pa», «give-give».
Exactly one year later — at two and a half the baby stood on all fours and crawled. This summer, Vova began attempting to sit up on his own, his vocabulary began to expand, and he began repeating a lot.
This fall, the boy was referred for a examination at the Kharkiv Specialized Medical Genetic Center, where he was diagnosed with a methionine metabolism disorder and elevated homocysteine levels. An ultrasound revealed impaired left kidney function. In Kharkiv, Vova's parents were advised to take their child to a good immunologist.
As soon as the kidney examination was completed, the boy was transferred to the Kyiv Institute of Immunology and Allergology named after Bogomolets to Dr. Maltsev D.V. He ordered an extensive immunological examination, the results of which shocked the baby's mother and father. The parents understood that their child had problems with his/her immune system, but they couldn't even imagine that it was so bad. The preliminary diagnosis was: immunodeficiency, NK cell deficiency, and T-NK cell deficiency in the form of a congenital HHV-infection. 6
Vova requires an urgent, specific, long-term course of expensive treatment, the first stage of which should include antiviral drugs, interferons, and in further — immunoglobulins, under constant monitoring by testing in laboratories in Kyiv.
Doctors also recommended Vova's mother undergo treatment with her son, otherwise the boy's treatment will be ineffective.
Vova's mother is appealing to all caring people with a request for help.
We together can help Vova restore his immune system so that he can continue full rehabilitation and fight his main enemy — cerebral palsy.
For information on how to help, see here.
27.10.2014
"I returned from Kyiv late last night. Vovochka stayed home, feeling well and having already rested after the trip. I picked up the test results and went to the doctor. The doctor looked at the new MRI images, compared them with the previous ones, and said there was a slight improvement (Vovochka has extensive demyelination, the myelin sheaths have recovered, 30%all thanks to the completed course of treatment). According to the tests, NK cells have increased to normal, but TNK cells are still deficient. The doctor recommended a course of Cerebracurin + Deltalicin as prescribed, as well as Alfaferon 3.0ml No.15 and Lecithin. And come back for a checkup in two months.
And more good news – we received assistance in the amount of 25000,00 UAH. This amount is enough to purchase additional necessary medications and cover the current collection. It should also be enough to purchase the new prescription for the next two months of treatment. Thank you so much to all the caring and kind people who helped Vovochka!"
From Vova's mother's letters:
22.01.14
Hello, as of today, through his own efforts, and with the help of close relatives and friends, Vova has received 1.5 months of expensive treatment out of the 6-8 months to come, but unfortunately, our savings have been exhausted, and we were forced to ask for help from caring people and turned to the charitable foundation «Little Bee». Thank you to them for being there and for being willing to lend a helping hand in difficult times.
13.01.14 We were admitted to the hospital ROCHB, in the pulmonology department, where from 14.01.14 to 17.01.14We received 4- and IVs of 150ml of immunoglobulin (Bioven Mono) daily. After the fourth IV, Vova developed a fever 38.5 accompanied by vomiting, which lasted for 3 days. On Monday, his condition returned to normal. We continue to inject Alfaferon. As of today (22.01.2014 since the start of the treatment, Vova has received 24 Alfaferon injections (1 amp-349 UAH).
3.02.14
We need to go to Kyiv for a blood test and a consultation with our attending physician, and starting next week 11.02.13 we need to be hospitalized again for a second course of immunoglobulins.
Our family is asking for help from all caring people to help us raise funds to purchase expensive medications for our son Vova. There's very little time left until the next course of immunoglobulins, and over the past almost 4 year of constant examinations, tests, treatments, massages, and the services of rehabilitation therapists and other specialists, we simply can't cope financially on our own.
10.02.2014
Good afternoon! We have news. On Tuesday (04.02.14), Vovochka and I had a consultation with our attending physician, D.V. Maltsev, at the Bogomolets Institute of Immunology and Allergology in Kyiv. We also had some tests done there and returned home.
Good news: our Alfaferon injections have been cancelled, which is great news, as Vovochka's bottom is already completely blue from them. The doctor also scheduled his next appointment and follow-up tests in 3a month, after a three-month course of Octogam, which will be in May! Hooray, we can forget about it and take a break from winter trips to the capital on snowy roads. Although, to be honest, the news is only positive for Mom, because... Vova really enjoys riding the big bus and train.».
22.02.2014
Good evening, dear friends!
On Monday 17.01.2014 we were admitted to the Regional Children's Regional Clinical Hospital, and Vova received his first IV. Despite his fatigue, Vova held up very well. Over the course of a week, and with daily IVs, Volodya's general condition noticeably improved. Today 22.02.2014 Vova received his last IV in the hospital. He feels well! He tolerated the medication very well, with no side effects!!! I would like to express my deepest gratitude to the Charitable Foundation «Little Bee» for purchasing 2 bottles of such an expensive medication Oktags, your help brings Vova closer to his cherished dream – to become healthy! Thank you! And exactly in 24 days, which is 18 March Tuesday, we are scheduled to go to the Regional Children's Regional Clinical Hospital for Octagam IVs. There's very little time left, and the medication is very expensive.
As a mother, I'm asking all caring people for help in purchasing these expensive medications necessary for my son Vova's treatment!
04.03.2014
Almost two weeks have passed since the last course of immunoglobulin. Vova is feeling well, his attention has improved, he's adding new words every day, putting them together into short sentences, and he's become more demanding. This week, as prescribed by the doctor, we started treatment for giardiasis during a break between immunoglobulin courses. I'm very worried about how Vova will handle this course, as... It's known for its toxicity and poor tolerance, causing allergic reactions and other complications. So, I'm afraid to give him a lot of physical activity during this period. We're currently working on our own without a physical therapist. After the March course of immunoglobulin, we plan to resume full rehabilitation, including hippotherapy, speech therapy, and physical therapy.
18.03.2014
Hello, dear friends! We have wonderful news!
17.02.2014We were admitted to another course of immunoglobulins at the Regional Children's Clinical Hospital, where we were so happy. The Regional Children's Hospital allocated the necessary amount of Octagam for Vova's treatment for the March course, absolutely free of charge. I simply have no words to express my gratitude. Thank you so much from the bottom of my heart! Therefore, the bottles of Octagam purchased with the money raised will remain for April. 12 Vovochka is feeling well. He was a bit cranky the first day when they inserted the catheter, then he fell asleep. And when they hooked him up to the IV, he didn't even wake up and slept the whole time. But today, for all
6 hours under the IV, he was tossing and turning, playing, fooling around, trying to sit up, telling me stories, anything but lying still. During the break, when the nurse came in to check the system, Vovochka burst into tears, but the tears dried up as soon as the door closed! That's the kind of Artist he is! Once again, I want to thank everyone who is involved in Vova's life, who is always there, who is giving us such a real chance for his recovery! With your help and support, we will definitely succeed!
02.04.2014
Vovochka is feeling well! Last week (since 24.03.14), we resumed daily classes with a physical therapy instructor from the center «Future»(House with an Angel). Vova is working very hard and listening, and is eagerly awaiting the next session! The instructor noted Vovochka's progress despite the long break: his balance on his legs has improved, as has his attention and understanding.
We continue taking Abixa; medication prices have increased significantly, and I'm anxiously awaiting new prescriptions for the next period. Thank you to everyone who cares about us and helps!
17.04.2014
Hello! On Monday (14.04.2014) of this week, we were admitted to the Odessa Regional Children's Clinical Hospital for another course of immunoglobulin. Vova is feeling well and in a great mood! Today ( 16 ) of April is the third day of IVs. I can't find the words to once again express our gratitude to the Odessa Regional Children's Clinical Hospital! For the second course in a row, the hospital allocated the necessary amount of Octagam for Vova's treatment.
28.04.2014
Hello, dear friends! Vova is feeling well. The weather is wonderful, we go for walks and feed the pigeons. A massage therapist comes this afternoon and gives Vova a massage. For the last 4 month, we've been skipping massage sessions due to immunological treatment. Previously, Vova had regular massages every six weeks. He never completed the entire course, and each time he got sick, so we gradually transitioned from neurological massage to drainage massage for his cough.
We still have a whole week ahead, but we can already confidently say that Vova has become stronger and more resilient, and he's handling the load much better. The massage therapist noted significant improvements in Vova's mental and speech development. A huge thank you to all the people and organizations who have supported us throughout this time and helped with Vova's treatment. All our achievements and successes are only thanks to your participation!
19.05.2014
Good evening, dear friends! This morning 19.05.2014 Vova was admitted to the Regional Children's Regional Clinical Hospital for his next 4 course of Octagam immunoglobulin. The hospital provided the necessary medication. Our family expresses its deep gratitude to the Regional Children's Regional Clinical Hospital for their assistance. Vovochka now has the necessary Octagam medication until June. All that remains is to buy Alfaferon and Abixa injections.
The good news doesn't end there. The Foundation «Good People» Tavria V. will transfer the collected funds for Vova's treatment ahead of schedule in the near future. Therefore, we are suspending the fundraising until further medical advice! Vova's treatment is not yet complete; he still has a trip to Kyiv at the end of June, scheduled tests, examinations, and new appointments ahead of schedule.
29.07.2014
Hello, dear friends! Vovochka has already had a break from the IVs. We've completed the first week of massage therapy. Vovochka is working very hard, though he's a bit cranky. His weight-bearing ability has improved. We're going for walks. We're doing physical therapy at home ourselves; our instructor is currently on vacation. In August, we'll be attending classes with a speech therapist and special education specialist. Vovochka is feeling well. We're taking small steps toward our cherished goal – to be healthy!
Less than two weeks remain until the next course of immunoglobulins. The funds raised aren't enough to cover even half of the Octagam immunoglobulin needed in August. It's very important to start treatment on time, without interruption. We hope for the help of caring, kind people who will help raise the necessary funds to purchase expensive medications.
11On Monday of August, treatment with Octagam must begin.
10.09.2014
Vovochka continues to attend classes. He is feeling well. The final course of immunoglobulin is scheduled for mid-September, after which an MRI scan and a trip to Kyiv are mandatory. The situation is critical; the funds raised will barely cover the purchase of the 1th bottle of Octagam out of the 15 necessary ones, and we also need to buy 13 bottles of Alfaferon. Thanks to the help of caring people and charitable foundations, Vovochka received seven long months of expensive treatment on time. A huge thank you to everyone who has supported us throughout this time. We are now on our last course of immunoglobulin, and it is crucial to consolidate the results achieved during treatment. We desperately need your help; we can't do it without you. Please don't pass us by.
