“Health Fund for Children of Armenia" celebrated the 3rd anniversary of its activities in the beginning of June. It has managed to help more than 2700 children and provide support in the amount of more than AMD 1 billion, donate 6 pieces of medical equipment and train 12 doctors during that period. Mediamax has summed up the 3rd anniversary of activities with the employees of the Fund, doctors and the mother of Adam who has overcome cancer.
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Founding Director of "Health Fund for Children of Armenia" Armen “Armos” Martirosyan has had the desire to help people since early age, and the losses and hard challenges he had in his own life served as a signal for getting interested in such activities:
Armen MartirosyanPhoto: Mediamax
"I had a very hard time dealing with my grandfather's loss when I was three and I cried for several years because of that. Although I had a very good family and childhood, I was always guided by the desire to establish justice and I intended to become a judge. As a result, I became a lawyer and implemented activities in the state apparatus and international institutions for a short time, but I later understood that would be difficult to implement the foundations of the justice I imagined in that way."
The beginning was laid in 2010, when he held a fund-raiser for the first time on Facebook during the years studying in Vanadzor, joining the initiative organised by his friends. The amount necessary for Erik was raised, he left for Russia and then for Israel, but unfortunately, he died.
"I keep on talking about that child; the parents and relatives can see and go through it all again. I do not know how to apologize to them, but touching upon that story is very important, as it had a quite big and serious resonance on Facebook and had a great impact on me. It was the first time that thousands of people had joined around one cause and that is what laid the beginning of our activities which already have institutional foundations."
After establishing residence in Yerevan, Armen Martirosyan was engaged in popularisation of the scientific and educational sector, established a network which digitized a large number of materials and articles, and actively participated in scientific conferences, various events and seminars. He has established a large network within the scope of these activities, which has further assisted in helping children fighting for their lives.
Armen MartirosyanPhoto: Mediamax
"When there are small successes and the parents of an ill child raise several thousands of dollars with your help, many-many people start to apply. I understand now that I was simply out of my mind, otherwise with what confidence did I get in all that and express readiness to the parent in 2010-2011 to help to raise USD 20000-30000, when there were almost no opportunities and tools? I understood it further as a result of working with a psychologist as a result of what peculiarities I had initiated it all. But what is important is that I have never had failures and I have organised everything effectively."
Establishment of the Fund as a parting of the ways
The chain of fund-raisers gradually expanded and became comprehensive, although, according to Armen Martirosyan, there were multiple hardships as well during that time, and the hardest of them were the losses of some children whose life they were unable to save despite the multiple efforts made.
"Emotions are the most important for me in this life, but there was a period when I had completely frozen and did not feel anything. Then I became extremely emotional again; I gradually learned to deal with that turbulence. My life was also greatly impacted when I was diagnosed with cancer by the doctors in 2017. In the beginning, I did not understand what was going on, but a short time later I put myself together and left for Germany with the help of my friends to be operated, and now everything is good, thanks God!
Two years after the surgery I had already left the state apparatus and carried out consultative work with international institutions, and had been engaged in these activities for already a long time parallel to that. I reflected on my life deeper for a moment and understood that I had to either simply delete that page from my life or leave everything and engage only in these activities."
Photo: Mediamax
He confesses that the decision to establish a fund was not an easy one to make; he had been thinking about it for years.Firstly, he was the one financially providing for his family and relatives residing in Vanadzor, and besides, he lived in Yerevan for rent; he was leaving himself in the unknown if he left the well-paid job. But he overcome everything thanks to good friends who gave great strength to him by making sure that his life-work was the healthcare sector and helping people.
The Fund was established on 21 September 2020, but the war that started days later absorbed all the resources and works. We announced the new start of the Fund with my friends and colleagues on 1 June 2021 and announced that we dealt with issues of children with life-threatening and grave health problems.
"When I was establishing the Fund, I thought — how am I going to find AMD 5 million so that I am able to cover the administrative costs and survive myself in addition to helping children? We gave the start of the Fund on 1 June, and at the end of the year we had already crossed the limit of AMD 200 million as a result of public fund-raisers and corporate cooperation. I had no doubt that people would continue trusting me; I had seen abilities to join them yet 10 years ago and we had helped thousands of children with the help of thousands of people. Everything got bigger and bigger by the snowball effect and enhanced its scopes."
Armen Martirosyan finds it very important that funds work by the business rules; that they be not in the role of money asker and beggar but create such a system that organisations and individuals have a desire themselves to work with them. And he brings their example: they have received 45 donations in the last 3 years, held the largest and fastest fund-raisers in the entire Armenia and perhaps the region as well, by crossing the limit of AMD 105 million in 2 days.
"We have the largest portfolio of public fund-raising in our country. This is also due to being guided by the business rules; we do everything so that we generate business interest among corporate donors and contribute to increasing their employees' motivation," Martirosyan says.
Scope of support
The Fund included the following diseases within the scope of its activities in the beginning: cancer and malignant blood problems, kidney and liver transplantations, immune system disorders, grave pulmonary problems. The number of the diseases later increased and also included certain other problems that are life threatening and essentially impact the quality of life.
Photo: Mediamax
They have tried to find ways to help children systemically, so that they find large sums and implement some large-scale programmes by solving the issues on an annual basis. The training of doctors was also very important, as it would have been impossible to perform correct interventions without them.
“We presented substantiations to the Board of Trustees and received approval to include 3 more diseases in our list and help them same way annually in a coordinated manner. These are certain neurological diseases, non-malignant blood problems, and leishmaniosis. We do everything possible so that we carry out the treatment in Armenia, but if it is not available locally, we send them to the best clinics in the world”, he tells.
In the beginning, Armen Martirosyan dealt with everything alone, but soon Syuzan Hobosyan joined him. Now she is engaged in project management and easily deals with paperwork, which, according to Martirosyan, is the hardest for him, although he is able to give a solution even to the most difficult problems within seconds:
Armen Martirosyan and Syuzan Hobosyan Photo: Mediamax
“We have helped 2700 children and provided support in the amount of more than AMD 1 billion during these 3 years.Besides, we have gradually expanded the scope of our activities starting to help also to the capacity-building of the healthcare system. For example, we have donated 6 pieces of medical equipment to 3 hospitals, sent 12 doctors of 3 hospitals to international training”.
New directions as strategic development
A year ago they established the Hereditary Cancer Predisposition Clinic, and the next step was the programme for introduction of the Decentralized Asthma Model Implementation Project. As Martirosyan is convinced, it is important not only to treat children but also to understand why they get ill and how to prevent further complications. That is why they have invested money for the purpose of early detection and prevention of diseases.
“We spend AMD 70-100 million per year for the medication of 1500 children having asthma, by buying vital medications which are not registered in Armenia and are not available, but we can measure the real impact of this project in case of having preliminary data. Competent scientific data are very important for us, that is why we have developed a single Decentralized Asthma Model Project throughout Armenia. Developing countries like us have scientific researches and statistics; it has been established that there is 4-8% asthma epidemiology there, which means that we will have a close indicator as well, and in that case the number of ill children should be not 1500 but 30-40 thousand or more. We will conduct research among 15000 children in 10 marzes and will establish how many per cent of them has asthma that we do not know about. There are multiple such children around us; they can appear in hospital with grave pulmonary problems, the doctors can consider that the bronchi are enlarged and prescribe treatment. As a result, the State spends several hundred million, perhaps more than one billion drams, useless in a sense, on 20-30% of them and the children mainly do not receive the correct treatment and have irreversible severe pulmonary respiratory effects — a part of them becomes incapacitated and gain disability. Then the State provides them with allowance as those people are not able to work.”
According to Martirosyan, their next step will be the institutional development of the primary medical unit - polyclinics, and marz centre medical institutions. They are establishing 5 centres throughout the entire country at this stage; the first one will operate in Kapan Medical Center, and its activities already started on 7 May. They will carry out campaigns parallel to that, so that the parents take their children to those centres. They will be referred to Arabkir Medical Center in case of grave asthmas, and if the disease is of average or low risk, the treatment will be implemented locally. They have set a goal to detect the majority of children suffering from asthma within a few years.
“The Ministry of Health is very excited with this programme as well; we will implement the early prevention programmes jointly. We will calculate what medications and how much of them are needed, provide the data to the Ministry after imagining the volumes and jointly try to do so that children have no irreversible effects. An essentially smaller number of children have grave problems after using the necessary medications, and the rest live their ordinary life.”
Armen Martirosyan considers that the introduction of the effective asthma examination and management system will be an important example for the other diseases as well, serious scientific activities will be carried out in case of success, which will be presented at international conference and published in scientific journals.
They are planning to expand such research and preventive programs with a view to solving bigger and more important public healthcare problems and reducing the morbidity and mortality rates in long-term.
Everything started with Adam…
The first child who received treatment abroad with the help of the Fund was Adam. He came to the meeting with us in a very cute bow-tie which he had chosen himself according to his mother Meline Avetisyan. It turned out that he liked a lot working with the camera, was clear-spirited, made various facial expressions and constantly smiled. He also told that he had a dog named Lord that liked bones a lot, and he liked Lord a lot.
AdamPhoto: Mediamax
The personnel of the hospital and the Fund had not seen Adam for a long time; everyone was happy with how much he had grown up and changed and they immediately remembered what a difficult fight they fought 4 years ago to save his life. Adam’s mother said that everything had started in the Coronavirus period; 2.5-year-old Adam appeared at Abovyan Hospital with high temperature, and the blood tests were concerning when he was discharged, that is why the doctors referred them to the Hematology Center After Yeolyan.
Syuzan HobosyanPhoto: Mediamax
“We did bone marrow test and the picture was very unclear again. We appeared at the Intensive Care Unit of Arabkir Medical Center in a quite complicated situation and overcome everything with God’s and doctors’ help. We continued going for examinations every month; the indicators were very concerning again in summer; the disease had relapsed. Adam had the complicated type and the doctors told from the very beginning that there was a need for bone marrow transplantation; unfortunately, it was not performed in Armenia yet. “City of Smile” Foundation helped us with medications during chemotherapy; we overcame that cruel stage with the help of good atmosphere and doctors, but we had to leave for Saint Petersburg to continue the treatment. We needed help, as it was connected with a large sum.”
Meline AvetisyanPhoto: Mediamax
Meline Avetisyan had learned about "Health Fund for Children of Armenia” from parents in the hospital; they received support immediately after applying to it. She noted that people did not believe yet back then that 500 or 1000 drams could save lives, but then they realized that they make up the necessary amount by adding up.
After undergoing 3 chemotherapy treatments in Armenia, they left for Saint Petersburg and continued the treatment there. Every stage had its difficulties; Meline stayed in the hospital with Adam while her husband stayed in a rented apartment; the duty to bring necessary food to the child every day, which was allowed under a strict schedule, was placed on him. After staying there for 6 months, they returned to Armenia at the very first opportunity.
Photo: Mediamax
“Here we are in reliable hands and trust our doctors. There is a long way to go after transplantation as well; the after is even more cruel — there is a need for diets and keeping the child away from every kind of environments; I do not take Adam to very crowded places even now. Although the risk is smaller, we show cautiousness.”
She confesses that she has become a totally different person after Adam’s disease and has revalued the life, learned to be strong every day and passed her faith to the child as well.
Transplantations performed in Armenia
A year after the renovation and re-equipment of the Hematology Center in 2016, the first transplantation was performed there. Pediatric Transplantation Department hematologist, transplantologist Lusine Krmoyan highlights that they have performed the autotransplantation (donor and patient are the same person) with Germans; the professor at University Medical Center Hamburg-Eppendorf helped them, and they cooperated with doctors having arrived from Minsk as well.
Lusine KrmoyanPhoto: Mediamax
The first pediatric transplantation was performed in 2018, and they did again allogeneic transplantations on children with non-malignant blood problems starting from 2021; as the local doctors lacked necessary practice, Dr. Lawrence Faulkner from “Cure2Children” Foundation helped them.
“We have also included the children with acute leucosis whose disease becomes manageable in some cases and we did not succeed as a result of chemotherapy treatment. Before 2021, children had to go abroad for allogeneic transplantations, while the treatment is extremely expensive there. Before last year, we had not performed transplantations with acute leucosis, although both our other doctors and I have undergone training many times”, Dr. Krmoyan tells.
They have undergone training also with the support of the Fund and have participated in transplantation courses in several countries. Krmoyan and one of the nurses working at the Transplantation Unit went to Prague for one month and gained very effective practice. A year after returning from there, on 1 September 2023, they did the first allogeneic transplantation on a 3-year-old child with acute leucosis:
Armen Martirosyan, Lusine Krmoyan and Syuzan HobosyanPhoto: Mediamax
“Everything is normal with the child and the treatment is running its course. Children remain under our permanent control 1-2 years after the transplantations as well, as the disease may relapse after that as well. Until this day, 7 allogeneic transplantations have been performed, which will definitely have a permanent nature.
The Fund was able to raise a large sum of money during that time and transfer the children abroad for transplantations, mainly to Russia, and one child to Italy. But according to Krmoyan and Martirosyan, their primary goal has always been development of transplantation in Armenia, so that children’s treatment is conducted here. Treating children has become the life-work for Krmoyan; she gets happy when everything ends successfully, but she knows that it is also impossible to avoid unhappy incidents. She does not lose hope anyway, as they have no right to stop the fight at any case.
Work that makes live and motivates
Syuzan Hobosyan has worked at an international charitable foundation before joining the Fund, communicated with families having social problems within the scope of the community development programme and has seen the poverty existing in various parts of Armenia. When the program completed in the post-Covid period, she decided to rest for a little while and spend time with her young children. A month had passed when she saw the announcement of the Fund and decided to apply after consulting with her husband. “Certain values had already formed in me and I did not wish to do a job simply for money; I wanted to do a good job and see its result. The other motivation was getting to know Armen and understanding why he had devoted his life to it all, what he was guided by, what stimuli and values he had. I have later confessed it to him as well. I applied and passed a few stages during which Armen always asked me whether I was ready to undertake that job. I though — he did not want me to join his team, and it was only after being hired that I understood that he wanted my choice to be a conscious one.”
Syuzan HobosyanPhoto: Mediamax
She gets sincere — the work is really difficult, but she is fortunate that she always meets strong parents and admires them. They gather themselves even in the most difficult situation and will turn the world around to save their children. Hobosyan learns to be stronger and appreciate the really important values every day thanks to such parents.
Hobosyan specifically emphasizes the comprehensive support of the "Health Fund for Children of Armenia": they bear responsibility for any patient and help to the end. They are not satisfied only with providing the necessary amount; they even help to fill out the visa application, find a rental apartment, contact with hospitals and help the children’s families with any arising problem.
Syuzan Hobosyan gets sincere that it is impossible not to relive the others’ pain during work, which may lead to various consequences by accumulating. She has noticed that when she learns during talks with the parents because of what the disease has started with children, she panics if she hears such complaints from her 3 and 6-year-old children and feels a need to speak to the psychologist about her fears.
The most important for Hobosyan is the result of her work and when she sees to how many children they are able to help and save their lives. She has even become used to the parents’ night calls or weekend calls; no matter how difficult the work is, it is extremely motivating and makes live at the same time.
New clinic and great future projects
Pediatric oncologist, hematologist Anna Avagyan tells how the idea of establishing the Hereditary Cancer Predisposition Clinic, the head of which she is, arose. In this center, where they will examine children with hereditary cancer predisposition and keep them under control, the cancer will be detected at the early stages and the chances of treatment will be high. “It is a quite innovative program around the world; children are often ignored in countries developing like ours and with low resources, because their diagnosis is quite costly. When Head of the Clinic Gevorg Tamamyan offered to establish it, we were not able to find sufficient funding for that purpose. Fortunately, we were already cooperating with the "Health Fund for Children of Armenia” under other programs and Armen Martirosyan expressed a wish to support a scientific research program. That is when we thought about the clinic, the official day of opening of which was 1 June 2023. We have had quite a progress within this one year; we have created our own in line with international guidelines; we have trained the doctors and specialist working at the laboratory, nurses, psychologists and equipped them with the relevant knowledge.”
Anna AvagyanPhoto: Mediamax
They have already started choosing in the retrospect the children who may have hereditary cancer predisposition syndrome and will subject them to genetic testing. Avagyan notes with happiness that they conducted genetic testing for the first time around 2 weeks ago, which is a quite big achievement. She notes that one test costs around USD 1000; they have the necessary equipment at the clinic, and the Fund has covered the costs for the related substances. Anna Avagyan has also addressed benign diseases which mislead a lot of people by being considered as treated easier. As a result, they do not get sufficient attention and do not get funding, whereas sometimes they have even a graver course than malignant diseases and even threaten the life as much. “They often require emergency treatment, but as we did not have sufficient funding to buy expensive medications, we had to leave a part of the expenses on the parents and apply to various foundations. It has been around 2 years that the Fund expressed a wish to help those children as well and provide necessary medications.
Armen Martirosyan, Lusine Krmoyan and Syuzan HobosyanPhoto: Mediamax
The shifts are a great stress for us, because we often do not have sufficient means to provide assistance to children coming at late hours. We had a heavily bleeding child recently who urgently needed quite expensive intravenous immunoglobulin injection. Fortunately, the Fund had provided it for another child before that and we had it in the refrigerator; we called the Fund at that late hour and received a permission to use it; the result was already noticeable with the child in the morning. “The doctor does not hide that the work is very difficult, but the contact with children and the friendship established during the treatment help to overcome everything; she is motivated as a result of these all and wants to do even the impossible for them.
Hasmik Babayan
Photos: Agape Grigoryan
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