It's not a sentence

Author: Hasmik Hovhannisyan
Editor: Fëdor Kornienko
Photos: Fëdor Kornienko

May 14, 2020

“Don’t tear out the tongue, don’t break the jaw.” We are talking with Elena Baghdasaryan, president of the “Road of Life” charity foundation, about why it’s important for people with epilepsy to get quality drugs, for society to develop charity sector, for foundations to fight against scammers, as well as about chicken received as a gift, about stigma and how to help foundations effectively.

23 min read

The door to a cozy bright office in the Arabkir medical center, which Elena temporarily occupies, swings open every now and then, and the next visitor with papers and questions to the “doctor” comes through. Elena patiently replies that she is not a doctor, looks through the papers and sends them to the right department.

Visitors often miss the amendment and call her “doctor without a coat.”

“Doctor without a coat” finishes sorting out a stack of children’s case histories on the table, discussing some of them with doctors on the go and going to the encephalographic room. A thin girl sits in a room in a hospital wheelchair. She is in a beautiful green cap with electrodes fixed on it, which pick up electrical impulses from brain cells and transmit them to a computer screen. The screen for about two hours will broadcast incomprehensible lines to me, then the doctor will decrypt them and get information about the condition of the child.

In front of the wheelchair is the girl’s mom. She, like her daughter, is at a loss. The nine-year-old girl with epilepsy was brought to intensive care a couple of days ago, and she still doesn’t really understand what happened to her.

“Don’t worry,” Elena tells mom. “Let’s hope it doesn’t happen again.” And if it happens again, we have very good doctors, there are all kinds of examinations, together we’ll figure out what to do.” I don’t know how the mother of the child has, but I feel calm that Elena doesn’t lisp and doesn’t assure that everything will certainly be fine, but she promises that she will be around and will help in any situation.

Fëdor Kornienko

We return to the office and begin to talk, intermittently interrupting a variety of hospital matters, calls from the parents of small patients, and a never-ending knock on the door.

— Do you remember the very first child you helped?

— That was eight years ago. I myself, a year before, had a child with epilepsy. I came to the hospital for the results of another examination. I stand in line and suddenly notice that a man is sitting in the corridor and crying.

I will never forget his face, so terribly he cried. He said that he has a small daughter with epilepsy, and she needs the Keppra drug, which is not in the country. And when we realized that “Keppra” was helping our son, we began to ask all our friends and relatives to buy and send in packs so that we would never be in such a situation that there was no medicine. Well, I told him: come to my house, I will give you the drug.

After some time, Biaina Gagikovna [the head of the neurological department of Arabkir] calls me and says: “You know, he brought the chicken. One to me, the other to you. ” Imagine, a man did not forget, from the Sevan village where he lived, dragged what was on the farm as a token of gratitude?

This is what started with this child. Then I saw a woman in a pharmacy who was crying and asking for an anticonvulsant medicine. I gave her my business card and began to help. This is generally some kind of mysticism — such “random” meetings took place and are happening all the time.

This woman in the pharmacy, being very active, began to transfer my number to other mothers, and one day we found out that our Keppra reserves were exhausted. We had a scandal with my husband — he says you have a sick child, but have you distributed everything? (laughs)

Dania, her son, was lucky — he had benign myoclonic epilepsy, which can occur from six months and usually goes away at six. But even when he recovered, my inertia friends continued to send medicines, but I did not stop them and passed them on to other children. Everything was spontaneous, at the level of amateur performances, never thought that it would result in something professional.

Fëdor Kornienko

— And at what point did the need arise to formalize this activity as a fund?

— I wanted to open a fund a long time ago. But everything pulled, because it requires a lot more resources and responsibility than when you just help.

Previously, I only helped with medicines, there were few examinations. Nobody transferred funds to me. The sponsors were mainly my friends who bought the drug or paid for the child an MRI scan.

A year and a half ago, I realized that everything, you already need to open a fund so that there are more opportunities to help. Now we provide children with epilepsy with medicines, examinations, including those conducted abroad, and also try to inform people about epilepsy.

— Three years ago, the priest told a friend who has a son with epilepsy that the child is possessed by the devil, and even undertook to expel him. Why, with such access to information, is epilepsy still treated like a plague?

— Epilepsies are really afraid of us, like leprosy. It seems to people that they will become infected, and to parents — that someone finds out, conversations will begin. Often, parents prefer not to tell their children that they have epilepsy: all of a sudden they won’t marry their daughter or a neighbor will open up gossip.

Even now, when I tell my story, they say to me: “Why? “Everything went well for you, you have a daughter, she still needs to get married.” I don’t know how to relate to this, to be honest: laugh or cry.

There is such a powerful stereotype that children with epilepsy are abnormal, incurable, and mentally ill. Meanwhile, epilepsy is a neurological rather than a mental illness, and in 70% of cases it’s successfully treated. Most children with epilepsy are no different from their peers and lead a socially active lifestyle if their attacks are stopped with good modern medicines. They attend schools, play in the yard, and no one from the outside will even say that the child has epilepsy.

Many even in my personal environment don’t want to know about epilepsy. It seems to people that this will never affect them or their loved ones, because “in our family everything was normal.”

Often, parents prefer not to tell their children that they have epilepsy: all of a sudden they won’t marry their daughter or a neighbor will open up gossip.

Meanwhile, we are an old nation with many genetic mutations, such walking bombs that can explode at any moment. All that is needed is a trigger for the mutation to turn into a disease. For example, in my child it was most likely due to intrauterine hypoxia during pregnancy.

I really want to write stories about the children we helped on the foundation’s Facebook page. Stories with a good ending, which tell that epilepsy is not a sentence, where everyone will understand that his attitude can organize such an end.

When I shared this thought on my page, there were a lot of comments from subscribers that they won’t read it, their nervous system is very labile. I believe that you still need to talk about epilepsy, because myths are born precisely from ignorance. Someone will take care of their psyche and not read, but someone will find out, change their attitude, and want to help.

Fëdor Kornienko

— How much you yourself nine years ago were ready to hear that your child has epilepsy?

— I was also sure that epilepsy exists somewhere in a parallel universe and cannot happen to us. Dani’s attack began while swimming. His eyes rolled up, his jaw clenched, he turned blue. The sight was terrible. It seemed to me that he … just died. Someone from the neighbors called an ambulance, he was brought to the “Arabkir” in intensive care. They immediately told me: either a brain tumor or epilepsy.

We did a CT scan. Then we went to Tbilisi for an MRI (in Armenia, at that time, he was not there). We were told that there was no tumor, but the attacks continued. I had to take seizures on camera so that the doctor, by the nature of the seizure, could understand what type it was and prescribe treatment. Only a year later he managed to make an accurate diagnosis and select a scheme.

It seems to people that this will never affect them or their loved ones, because “in our family everything was normal.”

— Did the local doctors pick her up?

— Yes. We have amazing doctors from God. When Dani had a seizure, I immediately began to think that I should sell to take him abroad, contacted foreign doctors, and they told me — you have Biaina Gagikovna Sukhudyan, who will give odds to any foreign doctor, go to her.

Then we became friends, and I created the fund not only to take care of the children and their parents, but also to express my gratitude to the doctors and at least somehow facilitate their work. These are doctors who fight for every child. But how can they treat children if they don’t know the diagnosis? To find out the diagnosis, you need to undergo an expensive examination, and parents have no money. There is no money, they turn around, leave. Or the doctor prescribes the right drugs, and again the parents don’t have the means to purchase them, and the child doesn’t receive treatment.

We had to bring new and effective medicines from abroad for crazy money. [But when] we brought Keppra from America, the next day the attacks stopped. We could afford it, but thousands of mothers could not.

— And then what did they do with their children?

— They were prescribed the medicines that were available. Some of them were of high quality and suitable for the treatment of one type or another of epilepsy, for example, Depakin (valproate), which is considered a classic drug for controlling epiproteps.

But sometimes they were cheap and not very effective drugs or Indian generics that went through the tender and helped not everyone. High-quality and modern antiepileptic drugs at that time in the country were few. Those who had the opportunity, by all means, found and brought in the drugs the children needed from abroad.

My son, for example, “Depakin” did not fit, his liver function parameters began to deteriorate, he refused to eat, and in the meantime the attacks did not stop. Until we found Keppra, which was then brought over the years from America, and Suksilep from France. In this scheme, we achieved remission and forgot what attacks are. But we had the opportunity to acquire these expensive drugs. The vast majority of mothers of sick children did not have such an opportunity.

But how can they treat children if they don’t know the diagnosis? To find out the diagnosis, you need to undergo an expensive examination, and parents have no money.

— You often say “mothers,” not “parents.”

— Unfortunately, many dads leave the family when they find out about the diagnosis of the child. We did not have expensive drugs, including because if you bring the drug for 150 euros, it won’t pay off, because in Armenia 70% of mothers [children with epilepsy] are single mothers. If both parents are fighting for a child with cancer, for example, then mother, unfortunately, often remains alone with neurology.

Dad often triggers a defensive reaction — what are the genetic problems, what are you? I’m a man, I’m a hero, I’m healthy as a bull. If a child makes me doubt it every day, then I will go to another woman and give birth to another one who will be healthy.

In my practice, men don’t even want to take a genetic analysis, although often the reason is precisely in the paternal gene mutations. If it turns out that the reason is in the mother, often charges begin that she knew about her problem, but hid it.

Fëdor Kornienko

In order not to find out who is “to blame”, for many years they have been denying the disease and not giving children medication. We now have parents, whom we are ready to pay for the genetic analysis — for both parents and the child, and my mother doesn’t bring blood for analysis for the second year. She is afraid to know that one of them is a carrier. Often, it’s after these analyzes that families break up. Meanwhile, instead of looking for the guilty, you need to immediately direct all your efforts to help the child.

— How to support a parent so that he helps his child and influences the attitude of society towards him? How to make dads not leave?

In fairness, I must say that, of course, not all dads leave. We have wonderful dads who fight for their children, while mothers are at a loss and don’t want to admit the fact of the disease, nor do treatment. [More] often families break up due to the fact that mom and dad are alienated from each other. It happens that they fight together for the recovery of the child and disperse when he is already recovered. Because it’s hard to remember the atmosphere in which you lived.

Therefore, there must be professionals who would know how to provide assistance. We don’t have psychological assistance services for parents. All stages of acceptance of the disease — denial, struggle, humility, they go through themselves. My dream is to develop our foundation to such an extent that it changes. Other than talking to my parents, like a mom who went through the same thing, I myself can’t do anything else.

I can’t imagine how you can stand it without support and not go crazy. Constant attacks, nights without sleep, ignorance of where to find medicines and money for them, you also need to live, eat, dress. You cannot go to work, because there will be nobody to leave the child for.

Often, it’s after these analyzes that families break up. Meanwhile, instead of looking for the guilty, you need to immediately direct all your efforts to help the child.

Moms always have the hardest time, I think. I was lucky, the father of my child shared with me all the hardships. But even with a nanny and dad, when Dani had an attack, everyone fled to the porch, and I remained alone with him. With one hand I supported Danya, with the other I held the telephone and called the doctors, and also diazepam was injected into the syringe (for rectal administration).

— And how then did you go through all these stages?

— At first, I acted like many mothers whom I say now that I don’t need to do this: I closed at home, did not communicate with anyone, and mourned my grief. It seemed to me that this could not happen to me and my child, sometimes I wanted to disappear.

After the first attack, which lasted more than ten minutes and was accompanied by a loss of consciousness, Dania stopped talking. I then did not know anything about epilepsy, how the epiprote appears and happens. It was a classic generalized attack, long, it was repeated twice after.

If the attack lasts more than five minutes, the child must be urgently taken to the hospital, otherwise there is a danger of the onset of the epistatus — a constant alternation of attacks with loss of consciousness, respiratory arrest, up to a coma and death. Everything must be done to prevent this.

I can’t imagine how you can stand it without support and not go crazy.

“Keppra” stopped only large episodes from his son, and small ones (which could spill over into a large one) happened to him every day for a year, until we found the right drug regimen. Children with the same form of epilepsy are often prescribed different treatment regimens, there is no universal gold standard, and there are recommended drugs. My child had it “Keppra” and “Suksilep” — both dear and both were absent in Armenia (“Suksilep” is still missing).

I was afraid of attacks and preferred to sit out at home so that no one saw them. We even bought an apartment in the Arabkira area to quickly bring it to the hospital, if that. An attack at Dani once happened in a park, and we stopped going there. Around us, people gathered and wailed. Then I just fell into a stupor from screams, noise and tantrums and could not concentrate on the child.

I was very supported by Biaina Gagikovna, who answered my calls at five in the morning, when the child had an attack or it seemed to me that it would be now. She pulled me out, helping me not to go crazy.

Biaina Gagikovna told me to film the seizures on camera and wait — in a year she will tell you exactly what his epilepsy is. I pestered her with questions, but what else can I do, how to speed up this process, because uncertainty kills. On the other hand, you are afraid of certainty [too], it may not be what you want. Before the diagnosis, you live in limbo, after — you become happy if he is good, and you turn into a robot, programmed daily to give medicine according to the scheme and periodically make an encephalogram.

— And if bad?

— I will honestly say: I don’t know how I would behave if they told me that my child won’t be cured. I’m always lost with the parents of such children, I can’t find the right words, I feel guilty before them, although I understand with my mind that I’m not guilty of anything.

Dani had infantile benign myoclonic epilepsy, which began in two and a half years and completely ended by six years. Danya went to school absolutely healthy, he is an excellent student. But for a long time after the dosage of drugs was reduced, and then completely canceled, I could not believe that everything was behind. And just a couple of years just in case I carried them with me and took them on trips.

If the duration of the attack is more than five minutes, the child must be urgently taken to the hospital, otherwise there is a danger of the onset of the epistatus.

Even with our “good” diagnosis, it was not easy. A close friend who was nearby helped me a lot — she was sleeping and spending the night in intensive care with me. The other friends stopped talking to me then. People are uncomfortable from the side. They don’t know how to behave. You were alone, and you had one child, and now you are completely different, and you have a different child, and other concerns. And you are not interested in what club they were in yesterday and what they listened to. And they are not interested in hearing about your new concerns.

— How many children with epilepsy are registered in our country? How many of them are “Road of Life” wards, and by what criteria do you choose them?

— I work mainly with the Arabkir Medical Center. There is the only children’s neurological department in the country, very well equipped. But, of course, I’m ready to work with any doctor and help any child, no matter which hospital he is registered in.

In “Arabkir” there are about four thousand children under the age of eighteen (there are five thousand registered in the country in total). Two and a half of them — just like our wards. We have areas in Armenia where not a single case has been registered, but this doesn’t mean that they are not there, they simply don’t come and don’t register. Someone is again afraid of publicity. Many parents have a low level of literacy, awareness and, I would say, responsibility. People have a sick child, and they refuse to pass a genetic analysis, and still continue to give birth.

Mostly doctors send children to our foundation. Many thanks to the doctors and residents who write the cases of the children and pass on to me, although for them this is an extra job. First of all, we try to help children from large families, with single mothers, from the districts. I’m always very enthusiastic in helping parents who are fighting for their child. I see that they need this recharge. And to feed people who have already surrendered … I don’t have so much strength to invest in them. If the parents themselves are not fighting for their child, how can they be taught this?

Fëdor Kornienko

Sometimes I sit down and listen. Parents don’t know who I’m at all. Those who are already working with themselves pass on my phone to each other. But we carefully talk about the fund. On the one hand, we need to be aware of him. On the other hand, such an influx of parents will rush to me, but our possibilities are still limited.

We don’t provide one-time assistance. I try to ensure that all of our cases are at least six months old so that the parent has time to pack up and think about what and how to do next. These are drugs and ongoing examinations during treatment to know how successful the treatment is, what needs to be changed. There are parents whose children we have been leading for years, because they are not able to buy medicines.

— Foam at the mouth, cramps — a picture that immediately appears before the eyes at the word epilepsy. What is epilepsy in fact, and how does a parent understand that it’s time to go to the doctor?

— Epilepsy is a repeated spontaneous, identical and short-term seizures in which the electrical activity of brain neurons increases. Attacks are very diverse in their manifestation and character.

One that lasts several minutes or longer, with loss of consciousness or convulsions, is called classic generalized (when the neurons of the whole brain are excited and activated). The body with such an attack is severely spasmodic, convulsions begin, often accompanied by vomiting, involuntary urination, the child can roll his eyes and make different sounds. But a generalized form of epilepsy can also be expressed in non-convulsive seizures, for example, with absences, when the child can simply “turn off” for a while, freeze, or startle with myoclonus.

To date, about forty different forms of epilepsy and various types of seizures are known, among which a large proportion are attacks of focal (focal) epilepsy, when a certain part of the brain is affected. Depending on where exactly the excitation of neurons occurs, seizures appear in different ways. For example, an arm or leg, or part of the face twitches. Sometimes these are hallucinations in the form of unpleasant odors, sounds, flashes of light and so on.

If the parents themselves are not fighting for their child, how can they be taught this?

Often parents and others don’t understand that this is a matter of concern, and, of course, at first they don’t have any thoughts that it’s epilepsy. Many children have one attack, which can frighten a parent very much, but never again. If the seizures and incomprehensible “disconnections” are repeated, they occur spontaneously, but with a periodicity — this is an occasion to visit a neurologist, who, as a result of examination and history, is determined with further diagnosis.

The reasons may be genetic mutations associated with severe neurological syndromes, immunological and metabolic syndromes, structural changes in the brain, injuries, strokes and vascular diseases of the brain, infections — both intrauterine and transferred.

— By the way, we also have stereotypes about convulsions — forcefully open your jaw, put a spoon in your mouth, pull out your tongue … How do you really need to help a person who has an attack?

— Nothing needs to be pulled out, you need to turn the person to one side so that you don’t choke on your own saliva or vomit, put something soft under your head. A person during an attack doesn’t feel pain and doesn’t realize what is happening to him.

don’t tear out the tongue, don’t tear out the tonsils, don’t break the jaw. Attacks are basically self-sustaining. If the attack lasts longer than five minutes, you must definitely call an ambulance. The main thing is not to panic, not to get mobile phones and to click, but to help the person who has an attack.

— Do parents need to say at school that the child has epilepsy? When getting a job, a person needs to inform the management about his diagnosis and are there any works that are contraindicated for people with epilepsy?

— Parents should inform the nurse, teachers of the school as a whole, report that the child has epilepsy. Many by all means and possible ways hide the shameful “medical record” that seems to be for them and their future child, they perceive it as a label.

There are cases when parents hide the diagnosis from the child himself, instead of explaining to him in detail about the disease and telling him how to behave if he becomes ill.

Fëdor Kornienko

I would advise in an accessible form to tell friends, so that in the event of an attack they could correctly provide assistance to the child. Why are parents suffering from stigma, discrimination and stereotypical attitudes towards their children in society not trying to change it with their own behavior? Because our society is not ready to adequately perceive such information, to restart in its perception of others. But water sharpens a stone.

Also when applying for a job. People with epilepsy are hiding their diagnosis for fear of not getting a position. Indeed, in practice in most cases this happens, in fact, only activities related to extreme conditions are banned: driving a car in a number of countries, serving in the police, fire departments, guarding important objects, working with moving mechanisms (conveyor production ), chemicals, near water, surgery and the like.

Epileptologists don’t get tired of repeating: their patients, most of whom in the period between attacks are no different from healthy people, don’t need any special restrictions. Moreover, often attacks occur just in the period of a passive, relaxed state. Whereas mental activity helps to reduce epileptic activity.

— What diagnostic and treatment methods are available with us, and which ones should be sought abroad? What exactly does the fund pay for?

— First, a CT scan, an encephalogram and an MRI are done in the hospital, everything that is possible is excluded. Surveys at us are not all free, but many are included in the state budget until the age of eighteen. However, quotas are limited and children have to wait in line for months.

There are cases when parents hide the diagnosis from the child himself, instead of explaining to him in detail about the disease and telling him how to behave if he becomes ill.

MRI in Armenia is mainly one and a half. But in many cases, it doesn’t show the whole epileptic picture, and we need a three-word apparatus with the EPI mode (the epileptological protocol used to visualize small structural pathologies of the brain) — it’s only in the Astghik clinic, and the line in the direction is recorded there until June.

Paid screening is expensive. Therefore, in urgent cases, we pay for MRI. If the MRI shows that there is an epileptic lesion in the head that can be removed (that is, if it’s not near the motor area, for example, then it cannot be touched, otherwise the child may be paralyzed), you still need to confirm this on a PET-CT scan.

This is an apparatus that visualizes in detail the epileptic focus for surgeons. If you remove this focus, the child forgets that he had epilepsy. We have a PET-CT apparatus in our country, but it doesn’t work, the production of isotopes has not been established. Now we are sending the child with the parent to St. Petersburg, to the Ankylosing Spondylitis Institute of the Human Brain. We pay for the examination itself, ticket and accommodation.

Since October, 24-hour video monitoring of EEG, which was very expensive — 75 000 drams, is included in the state budget. And it happens on the latest device, which has no analogues. Routine [monitoring] — for two, four, six hours — we often pay.

— You also managed to break through the license for drugs that really help and don’t have strong side effects, and even include some in the state budget.

— I managed to convince the Ministry of Health of the urgent need for the import and registration of unparalleled anticonvulsant drugs. I managed to reach out to them about the impossibility of participating in the tender of inefficient Indian generics, which the state bought at a low price. There was a time when I went to the ministry every two days. Everyone already knew me.

Recently I saw the minister in Arabkir, I couldn’t make an appointment with him for a year — they constantly wrote me to the deputies. I asked him: “Can you appoint me to that deputy minister whom you won’t dismiss in six months?”. Because all my nerve cells die in communication with them: not everyone has a medical education, not everyone understands what you are talking about, not everyone wants to listen, you make contact, agree on something, the next time you come, and he already fired.

Fëdor Kornienko

But at the same time, there are people in the ministry who are ready to hear and help, and I’m very grateful to them. Since last year, two important drugs — French-made Depakin Chrono and Russian Letiram, an analogue of Keppra, have been provided to children (Letiram adults too) under the state budget.

We also managed to officially import into Armenia a single batch of previously inaccessible Sabril, an indispensable drug that is used for infantile cramps and other types of epilepsy. Our parents either smuggled them in their suitcases — I did it myself repeatedly — or purchased them on the black market. Now the drug is sold in pharmacies, its cost compared with the cost of the black market has decreased several times.

It turns out that the state provides one of the necessary drugs, for example, and parents must purchase the rest, because they work only in the scheme. And these drugs are expensive. Therefore, the fund helps to purchase them. But, of course, it became easier for us due to the fact that the main two expensive and highly effective drugs, which we could not have dreamed about before, are already issued for free.

— And what happens to the wards of the fund when they reach the age of eighteen? Switching to more affordable, bad medicines?

— This is a very sore point. When our wards turn eighteen, they go to the Erebuni medical center, where the dispensary no longer provides them with the expensive quality drugs and diagnostic tests that they received from us.

We have a guy with whom we have come a long way. He underwent surgery, it was successful, but he still needs to take medicine. His dad has died, his mother is not working. He has already been transferred to Erebuni, but we continue to lead him. And in several other cases we continue. However, this is a global problem that must be solved at the state level; the fund is not able to help everyone.

— You said that in 70% of cases, seizures either completely disappear or are stopped with medicines. And how can drugs help in other, “hopeless” cases?

— This question is often asked to me by both parents and sponsors. Each generalized attack, which is accompanied by a loss of consciousness, leads to a brain shutdown for a certain amount of time. This worsens the quality of life, since with each attack the child may experience inhibition of the functions of the brain and nervous system, which may affect the loss of intellectual, motor skills.

Each attack can lead to a big leap back in development: we must prevent it so that the child can walk, talk, eat, chew, that is, maintain functions that may be lost if not help.

Not everyone has a medical education, not everyone understands what you are talking about, not everyone wants to listen, you make contact, agree on something, the next time you come, and he is already fired.

— How do you find sponsors? How do you convince people that helping a child with epilepsy is cool?

— And I’m just telling. There are people who are impressed, but there are those who don’t want to delve into it at all. It’s ten times easier to raise money for a child with the same oncology that everyone understands. it’s harder for a child with epilepsy and neurology in general because of the stereotypes that are established in our society.

I work on a targeted donation system. Here, for example, there is a case of a child who needs seven hundred twenty tablets of Vigabatrin for six months. The amount that is needed for so many pills, I will ask the sponsor. Then, for this amount, I will bring him an invoice and all the accounting documents.

This is good for the sponsor, he understands that his help went to a specific child, everything is transparent, but not good for the development of the fund, because we don’t add interest on administrative expenses — for events and marketing, for paying the salary to the same accountant, so that I myself can not engaged.

Our sponsors are mainly local companies. We work productively with several restaurants and shops. Very rarely I make fees, I write fundraising posts only for friends, with subsequent reporting — when, well, there’s absolutely no money. Then mostly help from the diaspora. But this also doesn’t need to be abused.

— And what kind of cases attracts sponsors most often?

— Naturally, with a good ending. Holding the case of a child for whom he will help with money and he will be cured, and for a child who needs the same money to “just” have fewer attacks, the sponsor will usually give preference to the first case.

Fëdor Kornienko

They treat very well those children who can be operated on, in whom focal epilepsy has removed the focus, and the child, as it were, begins a new life. Gave money and saw miraculous healing. No one even wants to think that there are children who won’t be cured.

I have problems with it every time. I need to either tell the truth or not say anything. I always say how it’s — this child will recover, this one won’t, but I beg you to give money for both, because we have no right to help only those who have the potential for recovery.

I, too, sometimes have the temptation to, let’s say, the temptation to help a child with great chances, but I think this is wrong. We don’t have any hospices for children, like the Russian “House with a Lighthouse”, for example, where such a child is provided with assistance. Therefore, as a foundation, I don’t have the right to share children with the potential for recovery from children who have a poor prognosis.

Money for genetic tests is still very difficult. This is in the mind of the sponsor, as it were, not a direct help to the child. Many genetic tests are very expensive, they need to be done abroad. But parents need to know if they have a mutation. This is important for treating the baby, and for subsequent pregnancy planning.

— Should the state support funds? What other obstacles do you have for the development of the fund?

— I think so — charity should be promoted at the highest level. But in our country, charity doesn’t develop due to some “artisanality” and the lack of joint actions to develop this culture.

We have now formed such a trend for charity in pediatric oncology, no matter how blasphemous it may sound. Many funds are involved in oncology, including under the patronage of the first lady, who has unlimited financial and information resources.

Children with oncology are very important. The problems are urgent and serious, a matter of life and death, but these are not the only sick children in Armenia. Many children with epilepsy also cannot wait, otherwise the consequences will be irreversible and can even lead to death.

And so not only with epilepsy. We have in the “Arabkir” on the second floor the department of immunology and allergology. There are children with primary, secondary immunodeficiencies and other syndromes that need immunoglobulin to survive. Immunoglobulin costs no less than chemotherapy. And there is not a single fund to help them.

Holding the case of a child for whom he will help with money and he will be cured, and for a child who needs the same money to “just” have fewer attacks, the sponsor will usually give preference to the first case.

If we had, roughly speaking, ten sponsors, then now there are two. People pay to those who are in trend, hoping to get some privileges and bonuses. We are a fund that is not affiliated with the authorities and exists outside of political changes. I have completed many projects with companies with which we have already agreed, due to the changing political situation in the country. People said: I’m sorry, but you need to go there. But what about the thousands of other children?

— So, briefly about the main needs of the fund — this is money and people, right? What amount are we talking about and what kind of specialists, volunteers are needed?

— It depends on how many cases doctors will give us, and how many will contact me directly. On average, my capabilities allow me to process cases for four to five million drams per month.

We need different specialists — marketers, PR managers, SMM managers who would offer interesting ideas, write grants. And now I’m doing everything alone, except for bookkeeping. Soon March 26 is Violet Day, the international day against epilepsy, [for which we] planned a lot of thematic events, filming in programs, broadcasts, resonant flash mobs. But because of the situation with the coronavirus, we canceled everything we worked on for months.

I’m a man gushing with ideas, but I’m simply not enough for the embodiment of all of them. We need people who would help me realize them. At the same time, the fund must have stable funds in order to pay for the work of these people, it must receive grants and participate in international projects.

— It would be great if we developed a culture of small donations and small deeds. For example, a person transfers a thousand drams to the fund every month from his salary. For him, the amount is small, and funds — such an important financial stability.

— This is very correct. We pay this thousand drams to the army. And from this we don’t get poorer. But we have problems, for example, with payment methods. Russia has a very good online payment system. There, if once a donation is made to the fund, you receive a notification that you can make it systematic in two clicks. But with online payments, it’s bad. Few people are not too lazy, go to the bank and make a deposit. We also don’t have an online platform [for fundraising]. Many people don’t have cards at all.

I have completed many projects with companies with which we have already agreed, due to the changing political situation in the country. People said: I’m sorry, but you need to go there.

— We also have such a complex — it’s a shame to transfer a thousand drams, but I can’t do it anymore. Better stay away.

— Yes. For many, many years I have been trying to separate the concept of charity from alms. So that people stop throwing some money and put a tick in their souls, that’s it, I did a charitable deed. So that people give their penny consciously. To plunge, and not paid off.

For some reason, there is such a superstition that if I start to get into all this, I will transfer this [disease] to myself. This “devil” will move to my child.

— And here’s about the correct terminology. About words like “illness.” I read an interview with an epileptic surgeon, where a journalist asked: “Is congenital epilepsy flawed?” And it bothered me that the surgeon did not pull him. But is it really so important to focus on definitions, and how to correctly designate epilepsy?

— I have this contradiction constantly. If we speak from a medical point of view, then of course this is a disease, the most common neurological disease. But I often say that people with epilepsy should not be treated as patients, referring to as some kind of abnormal, inferior.

More about the word “suffering”. We can say that people with epilepsy suffer. From the attitude of society, from life in constant expectation of an attack. Their character deteriorates, they become anxious, depressed. It seems to me that their whole life is changing. Therefore, yes, of course they suffer, like people with any other chronic diseases.

But on the other hand, such words as “sick”, “flaw”, “suffering” drive the child and adult into a dead end, take away the chance to get out. When we say “a patient with epilepsy,” we kind of condemn him, we don’t give him the opportunity to become healthy someday in the eyes of society. But in a large number of cases it will become. Of course, this is a difficult, thorny path, but there is a high probability that it will end with a good finish line.

— About small matters and about volunteers. What can each of us help right now? For example, to make friends with a mother whose child has a severe form of epilepsy and once a week pull out her coffee to drink either at a manicure or at the cinema — to unwind — will this be a good help?

“That will be very good help.” We often give moms gifts for the holidays, for example. So that they feel like women at least that day. Here the beauty salon offered us to give women gift certificates so that they did the styling, manicure and did not forget that they were women.

True, I don’t know how physically they will manage to do all this. Often this is a large family where one of the children is sick. But it’s very important to get mom out of Groundhog Day so she can switch.

— Is it difficult with parents of children?

— Our parents, of course, are different. There are very grateful parents. There are constant claims, communication with which takes a lot of energy.

The big problem for the foundation is that parents ask for help, but refuse to publish photos of the children. We arrange holidays, give gifts, buy medicines, but as soon as it comes to publishing a photograph of a child, no, it’s not necessary, but what will people say?

For many, many years I have been trying to separate the concept of charity from alms.

I understand that they worry and help without publishing. But so often it seems that the fund is not working.

When I work with regular sponsors, reporting remains between me and them. Some want to remain anonymous, others don’t want to advertise the amount. You don’t know how to behave so that it’s correct in the moral and ethical aspect. Sponsors monthly help more than 100 children, but at their request details and stories are not published.

Often the parents are not happy with the diagnoses of our doctors, and they begin to collect money to go to Germany for treatment, for example: because either this is a sentence, or there are parents who want to use their child’s illness to live in a more prosperous country.

We had a case a year ago. We are constantly struggling with scammers who collect and misappropriate money on the streets with photographs of our children, also our mother, who refused the services of the fund, filmed her child’s attack, put it on social networks, collected “fans” and a lot of money for which in principle, did not report.

— I remember the press conference that you organized with the heads of other foundations on the topic of dishonest gatherings after this incident. You are still in an unpleasant story.

— Yes, they wrote to me, they were threatened by the “fans” of this child. They even shamed me for not wanting to help a suffering child. The girl actually underwent examination by all local neurologists, she showed a serious metabolic disorder, in order to accurately identify [the reason] which she had to undergo examination in a good French clinic, which she was recommended.

I met with my parents, said that the fund will pay them for an examination, only to let them stop their own illegal collection. Parents have the right to make fees themselves if a number of conditions are met: there is an account from a clinic abroad for diagnosis and treatment, if this is not possible in Armenia (with confirmation of this impossibility), with full calculation of estimated costs, there is an officially opened bank account in the name of one from parents, and constant reporting. But we don’t have such cases, I have not seen a single such competent collection, although we have repeatedly explained to parents who refused our services in detail how to properly collect.

In the case of the girl, it turned out that the parents had already collected several times more than the required amount with their videos, but they did not want to go to France, but wanted to go to a German clinic, where the same examination cost much more. Moreover, they could not indicate any contacts and an invoice from the clinic with a calculation of future expenses.

I talked about this on my Facebook page, and threats fell on me and my children. For us, this, unfortunately, is a frequent practice, periodically even criminal cases are instituted on the fact of blackmail by fraudsters, which don’t end with anything.

Unfortunately, parents who prefer to collect the amount for the treatment of the child themselves, even if they themselves are honest, often fall into the hands of fraudsters. Inexplicable girls wander around the city with strange plastic boxes for storing food, and, showing a “scary” photograph of a sick child, they collect a lot of money.

We, representatives of official funds, repeatedly appealed to the minds of people, including at press conferences and in numerous interviews, to think and analyze before throwing money in such boxes and helping all parents indiscriminately. But to all this information is impossible to bring. We have no punitive measures against [such] fraud. It needs clear control from the state, the police. it’s also needed in terms of protecting us, the managers and employees of the funds.

— The conviction that funds and non-profit organizations exist for money laundering also plays a role here, and the mother doesn’t wish her child anything bad, we better help her directly.

— I constantly have to listen to such unfair and unreasonable reproaches and experience [on myself] a degree of distrust of the funds as a whole. Charitable foundations in Armenia are only at the beginning of their development and formation, while we are trying to form and develop a culture of philanthropy in the country.

Fëdor Kornienko

Yes, there are funds that work unfairly or opaque, but you don’t need to hang this label on everyone. I’m only responsible for the activities of our fund, which works exclusively through the system of targeted donations, in the most transparent format.

— You often happen that you want to drop everything to hell and live a “normal life”, but not?

— I experience periods of emotional burnout, when there are much more stories than opportunities, and a stupor sets in. I try to think about new projects and the relationships that need to be developed, on the other hand, I need to do some routine work.

There are still a lot of responsibilities towards their own family and children, no one has canceled them. Work in autopilot mode and chronic lack of sleep are doing their job. And at one point I understand that everything, I can’t, one in the field is not a warrior. Then I want to run away, disconnect from all this.

— What helps to cope?

— I try to work on myself. I came to the conclusion that you need to live one day, we don’t know what will happen next. Sometimes when you know this is scary, information is not always needed. The happiest people are those who know how to ignore it.

You can’t take everything to heart. You need to remain calm in order to be able to help as efficiently as possible. Otherwise, it’s easy to burn out. I don’t know how to abstract, but I try to somehow keep balance in terms of emotions. When they tell me that I’m doing a noble cause, I reply that this work helps me survive. Yes, it itself creates a bunch of reasons for depression, burnout. I often have the feeling that I’m fighting through locked doors.

Then, hop, some door opens, something happens. And then my wings just grow, I understand that it’s not just that I live here, that I benefited someone. It seems to me that a person’s ability and desire to do good is not nobility, it’s an absolutely necessary need to feel useful. When you realize that you have a mission that you consider important, it becomes easier to live.

Thank you for reading to the end!

“Road of Life” is the only charitable foundation in Armenia helping children with epilepsy and other neurological diseases. You can contact the fund and assist it on the fund’s Facebook page. Your support will give the “Road of Life” the opportunity to pay for medicines and diagnostics for children who need it.

 

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Translation of the article was supported by the civic society support programme in Armenia by NESEHNUTÍ (Transition programme of Czech MFA)