Roma is only 5 years old, but life has presented him with many challenges. The child has focal symptomatic epilepsy with complex partial and secondarily generalized seizures; Atonic-asthetic syndrome with pronounced coordination impairments; delayed psychomotor development; BKBG diet; disorder of sulfur-containing amino acid metabolism; complex immunodeficiency.
Roma's medical history. From a letter from the boy's mother:
The eight months of pregnancy were carefree and easy, with only a slight cold in the first trimester. It seemed that everything would be fine, and my baby would be born a healthy, rosy-cheeked little one. Ten days before the birth I went to a scheduled consultation, and from that moment my life changed sharply.
During the examination, I started bleeding (it was only several months later that the doctor explained to me that she had caused a placental abruption), but the doctor reassured me and sent me home with the words: «Go home, it'll get worse — call an ambulance».
I, not having experienced and relying on the doctor's professionalism, went home. But at home, my calm baby caused such a mess in my belly that it became clear — he was fighting for his life! We called an ambulance (the baby's heartbeat was already barely audible), and they took me for an emergency C-section. Roma had asphyxia (he didn't cry at birth). He was taken to the intensive care unit without being shown to me. His whole body was covered in tubes. What can parents feel when they see their firstborn in a cuvette under a machine? He lay there for a couple of days, then we spent another week in the hospital, and finally were discharged. Hooray! We thought the nightmare was over.
Everything seemed fine at home, our son was growing well: eating and sleeping. At two months, the doctor on duty gave him a vaccination against hepatitis B, and at Friday evening, the world turned upside down. We were playing on the floor (doing exercises), when suddenly Roma turned blue, went limp, rolled his eyes, and lost consciousness. I started shaking him, calling his name, opening his eyes, — which I didn't do, but he didn't regain consciousness (the most terrifying thoughts began to surface). The ambulance arrived, the doctor gave him an injection, and explained that he was having seizures.
Then there was intensive care, an EEG, an MRI, «Depakine syrup» (an anticonvulsant). The baby was diagnosed with — focal symptomatic epilepsy. Despair, hopelessness, tears, and Wild pain. Three broken lives, forever intertwined. Every day — is a fight for our son's future!
Then came all sorts of rehabilitation centers (the Ya. Korchak Rehabilitation Center, the Odessa Children's Rehabilitation Center (House with Angel), doctors, massages, physiotherapy, hippotherapy, canine therapy, speech therapists, psychologists, a swimming pool, and etc., and a huge number of medications.
The thought of my son's severe and long-term illness was already It didn't horrify us, but became normal. We couldn't put up with it and still refused to believe that we had a sick child. But with every rise in temperature (due to viral diseases, and we caught (Their very often) he had seizures again. We decided to fight against all odds and until the end! We visited practically every center using various methods. All efforts were not in vain, but the desired results were also not achieved.
The lack of positive results forced me to look again and for ways to help, To find the path that will lead our son to recovery, and relieve him of the suffering he has experienced since birth. Thanks to the help of caring people, in October 2012 near Moscow, at a boarding house «Dear», we were able to attend a course of lectures «What to do if your child has an injury brain». It was organized by the Institutes for the Achievement of Human Potential (Philadelphia, USA). Every day was scheduled down to the minute, we all worked (thanks to all the volunteers who came and helped us make the program).
We were at an examination in Kharkiv. Since May 2012 Romochka has been a member on registered at KhSMGC with Grechanina Yu.B. Then we contacted Kyiv Institute of Immunology and Allergology named after Bogomolets to Dr. Maltsev D. V. He prescribed treatment for the baby based on his test results, sending us off with great hope in a victory over epilepsy! The doctor sees only one way out — a powerful course of expensive medications: immunoglobulins, interferons, antivirals.
As of currently, Romik's monthly treatment requires 35630 UAH, and this is only the cost of the medications, and the baby also needs monthly rehabilitation and testing, expenses related to travel, some of the tests are specific and not performed by state laboratories — only private ones. Before this, we managed on our own, — my husband works, and I care for a disabled child. Our parents helped us a lot, but in this year, my dad was in a terrible accident and he himself requires expensive treatment and two surgeries.
At first glance, it seems that our case is not special, — there are many children like Roma, and we cannot help everyone. But we know how to seize opportunities and fight against all odds for our son's future!
We want to see him succeed, thanks to the Lord and to all of you! Please help us! We are ready to go until the end!
09.09.2014
The required amount for treatment has been raised. The fundraising campaign has closed.
26.12.13
Good afternoon!
We express our appreciation and gratitude to the Charity Foundation «Little Bee» for their care and support during this difficult time. We are so fortunate to meet such wonderful people with such kind hearts along our journey. Thank you so much!
Our fight against this disease continues with renewed vigor. After intensive care (4 December), we were hospitalized in Kyiv, in the neurosurgery department. All week, we had various blood and head tests. We had tests, an EEG, a head ultrasound, etc.
They tried to insert a catheter into our arms and legs for two days, but without success, and we need a lot of IV fluids (the doctor prescribed a first day 21 and then we'll see based on the results). They decided to insert a central line. Monday was our last «day off» and we decorated the room a bit for the New Year to lift our spirits. Tuesday was certainly a difficult and stressful day. — The pediatric anesthesiologist arrived and inserted a catheter into Romochka's subclavian vein. He was sedated and the procedure lasted for about an hour. For us, — the parents waiting outside the operating room, it felt like an eternity. An hour later, we took Roma to another building for an X-ray so the anesthesiologist could see how the catheter was working in the vein, and already at 18-00 the first IV was given. «Cemevena».
Since 25 December, our schedule is as follows: at 6-00 and 18-00 IVs are given. «Cemevena» to 1,5 hours. And at lunch, an IV is given. «Oktagama» 4 hours. Injections «Alfaferon» already at 6 million every other day.
Romochka is nervous all day long; we don't know how to approach him anymore—he's so whiny. You can't leave him alone—he keeps pulling the catheter off. I (Mom) can't sleep at all—I have to keep an eye on the catheter so he doesn't rest on it and pull it off. He keeps poking his hand in there, spinning like a top, and he likes to sleep on his stomach.
The child's physical and mental development is showing very positive progress, but things are still not going smoothly with the seizures, as we haven't yet managed to control the viral load. — Roma's immune system isn't coping, and a neuroinfection is one of the causes of the seizures. We've also been prescribed a repeat MRI of the brain on a more powerful machine and an MRI angiography (venous phase) to assess the blood flow to and from the brain. This is also a very important aspect in treating epilepsy, and if the blood supply is disrupted, surgery will be considered. There are many possible causes of seizures, and we need to eliminate them as much as possible so that Roma can live a full life.
Roma is currently undergoing treatment under the supervision of an immunologist, neurosurgeon, and pyeleptologist. We pray for all the best! The hardest part is that it all comes down to money. Besides the medications we can't afford yet, there are a bunch of different tests, examinations, and everything else that's so expensive.
Thank you to all the donors for your help, for all the kindness and goodness you do for our son! All the best!
30.12.2013
Romochka needs constant care; with our «explosive mixture» we had a fever for five days and had to constantly bring it down. It peaked on Friday, and Romochka finally had a couple of micro-seizures. We've finished all the immunoglobulins this month, now things are easier with the IVs. — only this morning and injections are left.
30.12.13 It was a big day. — My son had a spinal tap for tests and blood work. Our boy behaved bravely and, as the only one of our children, he didn't have to be euthanized. I look at him, and it's as if he understands everything and tells me with his eyes. «Mom, you're more scared than I am.» And with Dad's voice recorded, the procedure went well; they were able to get as many as 4 ml.
Tomorrow is an equally big day for us: we're going for tests, but this time under anesthesia.
07.01.2014
We've finally had some good news after a tough fight since August. — We have good news!
We've defeated two of the three viruses in our blood! It's a drop in the bucket, of course, but we've made progress, and this is a huge victory for us! Thank you, thank you! The changes are visible to the naked eye. There are some in the cerebrospinal fluid (CSF), but the titers are moderate. We're not stopping and continue the fight with hope for the next year! 2014
More good news — This is our Doppler scan. Circulation is normal, and the vessels are not pinched.
I can't say anything about the CT scan of the skull; it clearly shows how it was dented from behind, causing the cranial plates to shift out of place, and we're lagging behind in terms of head volume. It turns out the brain is growing, but the skull is small, causing decompression on the brain. — Hence our intracranial pressure. They're suggesting skull enlargement surgery to allow the brain to settle.
We're still getting IVs twice a day and injections every other day. We got the blood work done yesterday and are waiting for the results.
Thank you so much, our benefactors, our «Little Bee»! Peace, health, and tranquility to you, our loved ones! Thank you so much for your sensitive, kind, and compassionate hearts. May God reward you — with His generosity! The words we write to you are supported by daily prayers for you. Thank you so much for everything!
12.01.2014
Our family found itself in «turbulence». The expected complications arose—these are the consequences of the chemotherapy they're administering. We just didn't expect it to happen so suddenly, like «a bag over our heads».
Our blood tests and biochemistry tests went haywire, our liver function tests (AST and ALT) went up beyond 100 thrombocytopenia set in, our blood counts were abnormal, and our temperature rose 37,7 and SOY (which indicates intoxication). Our bowel movements were severely disrupted (food was not digested). We were urgently given detoxification IVs and connected to «Essentiale» and «Heptral». Now, starting at 6 this morning, we've been on IVs almost constantly. On Thursday, the blood test for the latest virus came back.
Hooray! The results: at the lower limit of sensitivity. And the credits <1000 (and it was from 10 000 - 100 000).
Romik was brought back to his senses a little with IVs, his fever went down, and he finally started sleeping. On Monday, they'll draw blood for tests and check his biochemistry and complete blood count.
We want to thank from the bottom of our hearts «Pchelka» for helping us purchase expensive medications for our child. Thank you so much!
02.03.2014
Romochka is holding up well. It's warmer now, and we're trying to go for more walks to keep our brain cells oxygenated. After his hospitalization in Kyiv, — we've been working — every day We go to physical therapy, speech therapy twice a week, and music three times a week. We also don't let ourselves get bored at home. It's clear Romik has become interested in everything; I tell him a lot of poems, and he tries to repeat them.
«Geptral» The injections were replaced with pills «Geptral» (The liver tests are still very bad after the chemotherapy). «Cardiomagnyl» (Based on the tests, they added it because the blood thickened as a result of the treatment) Phospholipids, «Keppra» — Continue.
There are moments when it's really hard, especially when you think about the future, but usually, no matter what, we try to stay positive and wake up with a smile. Romochka wakes up and tells him he's the best child in the world! That we'll definitely get better. Without some positive moments, without experiencing all this, without motivating yourself, you won't be able to carry on.
25.02.2014
Romochka had a 7 epileptic seizure! He recovered on his own, but lost a lot of strength (everything went smoothly without calling an ambulance or intensive care!). He slept for 24 hours, didn't eat or drink anything. Romochka is feeling better today, but he's very weak, so we carry him around the apartment and outside. He's pale, with dark circles under his eyes and a look of fear in his eyes, hoping to avoid a repeat of yesterday.
We're trying really hard to get him checked out as soon as possible, which includes a complete and detailed examination of his brain. Recovery is possible if we permanently stop the epileptic activity in the child's brain, which is constantly destroying it! The seizures prevent him from developing fully. With each seizure, Romochka loses some of his brain cells! We need to determine the cause of his epilepsy and identify all the affected areas of the brain. All this is ready to be done at the Spanish clinic. «Teknon». The clinic has truly unique equipment, the only one in Europe. — A magnetic encephalograph, which detects epileptic foci! This is exactly what they can't detect in Roma! The clinic will also conduct a full range of diagnostic procedures, including MRI, multi-hour VEEG monitoring, and tests for hereditary diseases. All tests require a week of hospitalization, followed by a week of outpatient care.
Thank you for your support and assistance. For helping us in our most difficult moments. Thank you, our dear «Little Bee»!
25.03.2014
Hello, «Little Bee»! I apologize for not writing in so long – we've had a busy time. After Kyiv, we donated blood on Thursday (thank God, we got it right the first time). We collected blood for an immunogram and to test for 2 viruses, which we cleared up in January. I also added «my own» to check (as my heart felt): liver function tests, blood clotting, and a complete blood count. That evening, we already received some of the results, which shocked us; the first thing that came — was an error. We called the lab to investigate, and they confirmed the results (liver counts had risen significantly. If the ALT norm is up to 41- Romik's is 436.4 and AST up to 40- Romik's is 434.1. We urgently went to the infectious diseases ward to see a hepatologist on Friday to sort things out. Ivanova gave us a list of tests to run and said there were two options:
1. Either it's toxic hepatitis from all the chemotherapy we've been taking and we need to go get a drip.
2. Or, over six months of IVs and catheters, we've contracted hepatitis B or C.
On Monday, we went to the lab again. We donated blood, but not so successfully (they injected his legs, arms, and fingers). Poor children, how many tests they have to go through. On Saturday, the TV company «Grad» came to us and filmed a report about our Romik.
http://grad.ua/archives/39709
Huge thanks to the Charity Foundation «Little Bee» and to everyone who is helping Romik in his fight against this illness. Only with your help, our dears, can he emerge victorious from this battle! Thank you! God bless you!
18.04.2014
Good afternoon!
On Tuesday, we were admitted to the pulmonology department and started receiving immunoglobulins. Intravenously. We borrowed them from Vovochka Gumenyuk's mother to save time, as Romik was in serious condition after an illness, and by Wednesday we had already repaid our «debt» because the charity «Little Bee» purchased 5 vials «Octagama» for the amount of 11 938,35 UAH. Thank you so much for your contribution to Romik's healthy future! With God's help and the help of such good people, we hope our son will recover. We thank our supporters, friends, and simply caring people who are helping us in this difficult task! Any help is important to us! To my beloved «Little Bee» and her benefactors — Thank you!
13.05.2014
I arrived from Kyiv yesterday. Everything is very scary and complicated.
Doctor's words: «He needs replacement therapy for eight to ten years. His immune system can't cope on its own. For the child to survive, he must be on medication constantly for these years.» He prescribed treatment for a month and wants to see Roma in a month. He wants to bring the child's blood samples, not the blood samples. Some of the medications are new, and a drug test will be needed.
Roma is sick (for the third time this month). He's very weak, and his immune system is weak. He's working completely.
We're so grateful to everyone for continuing to be with us! We really need you and we couldn't do it without you!
29.07.2014
Good evening, "Little Bee"!
.. We're doing slowly... On Friday 11 July, he had an attack. One (not a strong one), but it still really wore him out, and Romik slept for almost the entire day.
We're going to physical therapy classes, and we've also started Montessori therapy. We're getting injections.
Last week, we had a routine immunology checkup in Kyiv. We had tests done on Tuesday—thank God, it's not so hot. It was a success, and Roma tolerated it well! They've been treating us like family for a year and a half now—everything was done quickly, they drew blood quickly) and we were already free in 10-00
On Friday, I went to get the results and a consultation. The test results had worsened a little, but the doctor said:" slightly...don't worry, the prescribed medication formula is still working well for Roma." and prescribed us to continue our daily injections... On the one hand, it's very sad, I'll have to look for a spot on his little butt without a lump every day again and console my son, but on the other hand, I thank God—these aren't IVs, which are scary to think about...and they work! Thank you!
Continuing: Alfaferon 3 million and Propes + Tavegil, alternating every other day... until 31 August!
Thank you for your support and help, we really need you!
