Malik's story

VIDEO 1:Malik, before the beginning of intensive rehabilitation according to Stojčević Polovina, GMFCS Level III, unable to stand without support

I’m writing our story as short and as simple as I can, without much medical terminology, so that it is understandable to all, and the doctors will know if I made an error somewhere. I hope it will be read by those who need such information and that they will not lose precoius years for recovery, as we did.

We live in Sarajevo. Our son Malik, (born 2001.) with normal psychomotoric development had recieved by his 18th month all vaccines as other kids his age were supposed to recieve. He was a playing, running, talking child. In his speech he used 4 words sentences, which was, as I later found out, above the average for his age.

The reaction to the prior vaccines was short-term high temperature, up to 38.5 °C, which never lasted longer than 24 hours after the vaccination.

VIDEO 2: Malik, at the age of six begins with rehabilitation according to Stojcevic Polovina and with 9 years makes his first steps (2010)

On one Thursday, (15.08.2002.), when he was 18 months and several days old, after the doctors’ examination at the Health centre, according to the vaccination programme of Ministry of Health F BiH, he recieves re-vaccionation for DTP and polio orallly.

This time high temperature is still present the second day after the vaccine. Our visit to the doctors at the Health centre after arm and leg movements examination end with ensurance that the reaction to the vaccine can last up to three days. We return home and continue to give him something against high temperature, and the temperature drops, but then in short time it comes back, and this time it is up to 39 C. Again visit to the doctors, paeditrician at the ER, because the Health centre is closed on Saturdays, and it ends with constatatation that his throath is a bit inflamed, so he is given an antibiotic.

VIDEO 3: Malik walks independently without aids, after 5 years of intensive rehabilitation according to Stojcevic Polovina; improvement in GMFCS Level – from GMFCS Level III to II (2012)

Again medications, temperatures, showering, coating, drugs. Again visit to the ER on Sunday but it brings nothing new. We are sent home, although his tempereture is 40 C. We are advised to continue with medication and all other methods of lowering the tempereture. That night the temperature drops to 38 °C. In the morning, on Monday, we notice that Malik doesn’t have a high temperature, but his arm movements are unusual, he is twisting them outwards. His communication with us is low. We start to panic, we rush to the hospital. Examination, blood works, lumbar puncture, brain CT…he is admitted. His arms and legs start to arrest, he is getting more and more rigid. He starts to choke, he is getting out of breath, his body is convulsing from air shortage, I run to the nurses, and then back to his bed, and again and again. Finally, a nurse comes and tells me that they have no breathing machine available for him. I’m screaming, what does it mean, is he going to die. A doctor comes, carries him to the intensive care unit and he gets a breathing machine.

After a few days they take him off the breathing machine, but he is in a coma. He lies completely rigid, his legs streched out. He can’t see, no reaction to the light. We hear many things from many doctors. They say brain inflamation. They say that for about 70% of the brain inflamations the cause is never determined. They say it’s not the vaccine. They say that even though we are intelectuals, it is better for us not to know much and not to ask much. They say it would have been better if he had died. They say maybe he will recover up to 30%. They say that is is citomegalo virus that can penetrate the placenta and endanger my other child, which I’m carrying at the time. Only one doctor says the problem is caused by the vaccine. The case was in the media. For months there was media coverage on who is to blame. The vaccine was a donation, an australian manufacturer. We manage to contact the manufacturer through a friend, hoping that they have some experience and that they might have an antidote. The manufacturer claims that such thing has naver happened before. Later we find on the internet information on many vaccine consequences.

We practically live in the hospital. After a month we notice that Malik is blinking to, but he still can’t see. He is not talking. He appears to be reacting to sounds, to our voices.Singing calms him down. He is all rigid and without movements.
Blood and stool lab results (from Sarajevo, Ljubljane and Rome) are negative to viruses and all other probable causes.

Translation of the newspaper article:
Federal Ministry of Health organised evacuation
Malik flies to Boston on Wednesday
Needed money, 150 000 $, given by the FBiH government
Malik Trnka, a boy suffering from encefalitis, should, according to the last and most accurate information, fly to Boston on Wednesday, where he will be treated in the following months.
Malik is doing a little better, according to his closest relatives, there is some progress, but his condition is still severe. Namely, the boy still can’t see, nor hear, is having difficulty when moving, but it is expected that treatment in the „Floating hospital“ will bring some progress. Federal Ministry of Health, that took on the organisation of this trip tells us that the transport was the greatest issue here. „Lufthansa“ had finally agreed to ensure the medical transport, but the final confirmation is expected today. Malik should fly to New York with his father and a doctor, where he would be taken over by the „Flying angel“ plane, organised by the Boston clinic. Since they didn’t know which air company will be flying them until yesterday, and which route the travel will take, the Ministry of Health in cooperation with doc. Dr. Faris Gavrankapetanović contacted prof. Gregor Volenk in Vienna, who would with his authority ensure that Malik is admitted to his clinic in Vienna, if necessary to switch flights and in case of longer wait period between flights in Vienna. Luckilly, that won’t be needed.
Also, all the needed money, 150 000$ is given by the FbiH governemnt, out of which the first transfer of 30 000$ is expected today.

Ministry of Health and F BiH government send us to Boston, USA, for further testing. We stay there for 2 months. Numerous testing and results at the prestigeous clinic Floating Hospital for Children. Since all the results are negative they send us to Atlanta, where they do a live muscle mitohondria testing. This brings us the information that Malik has an oksidativne fosfoliracije defect. He got this from me, his mother, because only the females are carriers. For some this was a relief, because, here’s a great excuse for the problem. They say, it only takes a trigger, to start this. And what about all the women in my family? Why we haven’t had any problems? We all were vaccinated, we were all sick, we all had high temperatures and never, any of us with the same mitohondrije, (not only women but their sons as well), no one had this kind, or any kind of consequences or reactions. Our opinion is that the results from Atlanta are accurate but that this is not the cause for his condition. The same results would be found in me, my sister, my aunt, my aunt’s daugthers, my sister’s son, my aunt’s grandchildren, my younger son, and so on and so forth. Naturally, for some doctors the vaccine was not the problem, and we thought that is was. Malik’s recovery is the proof for our opinion. If it was true what some doctors claimed, he would get worse in time, and not the opposite.

In the meantime, at the Filipe Auguste lab facility in Paris in 2009. we did an urinary porfirin testing which showed a significant toxic effect of mercury. In the vaccine instructions that was given to Malik says that as preservative a chemical compound with 49 % mercury was used. However, this result has not been taken into consideration by any of the doctors as one of the possible causes for what was happening to Malik.

All in all,we have no more strength to deal with farmaceutical and doctors’ lobbies or with this injustice. We transfer all our energy to Malik’s recovery.

The recovery is ongoing, now for 9 years. In the beginning, for over a year Malik produced only screams. The first words that he spoke were yes and no. I repeated for a million times:” say yes”, “say no”. I didn’t know whether he was thirsty, hungry, or in pain, or why he screamed, often even during the night while he was sleeping. Luckilly today we fight, he goes to school, he is learning English.

His motoric recovery started a long time ago, while he was still at the ICU, under supervision of physical therapist from our clinic in Sarajevo. All movement patterns were erased from his brain. He was rigid like a wodden board and his hands were clenched. I remember that the teraphist needed a lot of strength in both his arms to bend Malik’s leg in his knee. Physical therapy, that was done with him on Physical therapy ward by a very devoted and very competent therapist T.H., brought us to relearning to sit and crawl. When he was 4 years old, we were told by a physical paediatrician:”Malik has recovered to sitting, crawling and with a possibility to verticalise by himself (sit up) with an object, but since it is still unlikely that he would ever walk, and since they have a lot of new sick children at the clinic, that they can no longer continue to work with Malik”. We were told that we can use local physical therapy dispensary at the Health center in Sarajevo in our part of the town, although they do not have trained therapists that can work with childern like Malik. I will not even write about how anry, enraged and disappointed that made me.

We used a professional camera to record one of Malik’s last physical therapy treatment in Sarajevo, that shows his condition at the time very accurately.br />
Now I’m almost grateful that we were told to go. We would probably continue for God knows how long to attend those exercises thinking that we were doing the best for our child. In Sarajevo we lose another year working with inadequatelly trained therapists at a dispensary. And then, luckilly, we hear about Prof. dr. Stojčević –Polovina Polyclinic in Zagreb. How happy we are to be working with these wonderful people for 5 years now, it is hard to describe. At the Prof. dr. Stojčević –Polovina Polyclinic a lot is different from what we are used to. If the child is upset, they don’t tell you to calm him down before examination. Nobody is strict with the child, they sing songs, they tell stories and the goal is achieved. They talk openly to the parents so you’re not in a dilemma about what you can expect and what you should do to help your child.

When he first came to Prof. dr. Stojčević –Polovina Polyclinic Malik wasn’t able to stand by himself even for 10 seconds. His body would fall down like a wodden board. Some movements (especially crawling) were irregular, so we had to go back to rotation exercises, sitting, and crawling, in oder to corrent the wrong movement pattern. Malik is among complex recovery examples. It was not an easy task to create an exercise that will improve his motor skills and then teach us, the parents, how to do it with him. But Tamara and dr. Polovina are here to think and use all their knowledge and experience to create exercises and then to teach us how to do them. When Malik finally learned how to stand, Tamara and dr. Polovina were even more happy than we were, because they understood what that means for him. They knew that correct standing paves the way for walking. They celebrated when he made his first steps on his own.Their professionally trained eye monitored every Malik’s movement, and body posture from head to toe. Even today, after so many years of working with them, we still can’t recognise some fine changes in Malik’s movements and posture that they see in a second.And they react instantly, solving the problem at once, creating a new exercise for him.

We came to Malik being able to walk fairly long around the room in his shoes. How? By a great deal of thinking about exercises that would suit him best. Thank God for these experts and People. Why People with a capital P? It is very important to emphasise that in the Prof. dr. Stojčević –Polovina Polyclinic we didn’t only find experts, responsability and professionalism in their work, but we also found people whose honesty, kindness and willingness to help your child can never be repaid by any means. We can talk to them about all the issues that we encounter, and these issues are numerous with parents who have a child with special needs. Open and honest approach that is essential in Prof. dr. Stojčević –Polovina Polyclinic is priceless. We can freely say that Prof. dr. Stojčević –Polovina Polyclinic is a friend of our children and our friend as well.

From a hopless case our son has become a recovery miracle. Our story is not finished yet, our work is ongoing. It is not important how many more years we will travel for 6 hours to Zagreb every 2 months. What matters is that Malik is doing great, and we as parents hope and believe and are doing everything in our power to enadle him to be self-sufficient and walking, and to see the day when he will no longer require any help from us whatsoever.

Malik’s parents