Fabi did all the tests today before immunotherapy, after which we had the meeting with the doctor who is in charge of his case and who gave us the news that from this moment on he no longer has any traces of cancer. It's hard to describe the happiness we feel right now.
Immunotherapy will last 6 months, it will be very difficult, especially at first, since patients complain of very great pain throughout the body, in addition to fever, allergies or dermatological problems.
At this time, the chances of survival correlated with the chances that the disease will not relapse are about 65%, and at the end of the immunotherapy they will increase to 75%.
So he will undergo a 6-month treatment for "only" 10% extra chances. But this ONLY means a lot to a cancer patient. We would be willing to go to the end of the world and for 1% extra.
There will be 5 cycles of immunotherapy.
In a few days he will start taking retinoic acid at home, after which he will be hospitalized for a minimum of 10 days for the administration for 24 hours a day of the immunotherapy drug, called dinutuximab beta. This is a cycle, and then continues with the following. Obviously we will keep you updated.
We would like to thank you for all the messages of encouragement and for being with us throughout this period. A veriled army of wonderful people gathered around Fabi. We consider ourselves truly lucky.
Fabi took another step towards his healing, with the completion of the 12 radiotherapy sessions. Everything went normally, with a few exceptions (vomiting, fever, states of molesting, lack of appetite), which fortunately were overcome. In fact, during the more than 7 months of treatment followed so far, these states, as well as many others, have been so common that we have become accustomed to them, we consider them something "normal", they have become a routine. That's why we don't even mention them all the time, but they exist, Fabi constantly bumps into them, but overcomes them and moves on.
Next comes immunotherapy, about which we will learn more in the coming days. What we do know, however, is that it will last about 5-6 months, being extremely tough and unbearable, but it is very important because it increases the chances that the disease will not relapse. The fight continues, but a 4th step was taken today!
Fabi is recovering better and better after the operations he has had, feels good, has gained weight thanks to the artificial food with which he is fed during the night, we go to the hospital once every few days for routine check-ups, and on Monday to start radiation therapy, another important point in the healing process.
At the same time we want to boast about it, it surprises us every day.
Dear ones, we have excellent news! The moment I had been waiting for for 6 months has come. Fabi got rid of the tumor! The second operation went very well, they also removed the remaining lymph nodes after the first operation, and at this point we are at the peak of happiness. If there are minor traces left that can not be seen with the naked eye, they will be destroyed with radiation therapy that will begin in 2 weeks. We hope that after radiation therapy he will be declared without traces of cancer and then be able to start the long process of immunotherapy.
Until then, we are enjoying the enormous success of the present and we have no words to thank the doctors here, because in Romania this operation could not have been performed. It was worked in two stages, with great care not to touch the artery and the surrounding blood vessels, and the doctors managed the impossible. Now, Fabi is in intensive care and is stable.
We would like to thank you for all the good thoughts and for living these moments with us, for taking care of Fabi's condition, for praying for him and for giving us hope. The road is still long to prevent relapse. We are only halfway through the treatment, but now we are more confident than ever.
Dear ones, we are back with news about the Fabi.
First of all, we would like to tell you that today Fabi turns 2 years old, and the anniversary caught him on a bed in intensive care.
Although it had originally been planned on August 18, the operation took place only yesterday, because other emergencies appeared that occupied the operating block. With the preparations for anesthesia, the operation lasted 11 hours. We were able to see him late last night. The good news is that they have managed to remove much of the tumor, but the bad news is that next week, most likely on Tuesday, a new intervention will take place to remove the rest. We were told that the tumor is very adhesive on the blood vessels, and that's why the intervention takes so long, being extremely cute. At the moment, fabi is stable, and despite the pain and all the wires with which he is connected to the appliances, he tries to get up. We look forward to next week to be able to say that he got rid of the tumor completely. One more extra stress, the second operation being totally unplanned, but we adapt to the situation, having in mind only the final objective.
The last few months have been really difficult, but at the same time they have taught us a lot. I discovered a world that I only knew in theory. I knew there were sick children, but I didn't understand exactly what this meant until I experienced it on my own. But I have walked into a world full of sick children. Some with a better chance and some with a lower chance of healing. Now, it's all taken on a new perspective. That hidden world that the common man doesn't see every day - that of sick children and continuous struggle - at this point has become our world. Fabi is now part of that small percentage of children with cancer. Very small. And at this point you realize that percentages don't matter anymore. It makes you think that you're not intangible, that it can happen to anyone. Why would it happen to any other child, but ours cannot be touched by the disease? What are we, Andreea and Stephen, more special about than others? It is an important lesson, and at this moment we can only hope that both he and all the other children in his situation will get better, enjoy the sun, play, mountain or sea, grow and leave behind all the evil and all the problems.
Dearly beloved, we have good news again. The latest pre-operation tests show that there are still no metastases, the tumor in the abdomen being smaller than the last ultrasound. It will most likely not decrease, but the operation should be able to be removed as much as possible. Of course the doctors will try to remove it completely, just as we hope it will happen, but that depends on many other aspects that surgeons will only know at the time of the operation.
The only problem may be that Fabi still needs platelet transfusions after transplantation, with plaques playing an important role in closing wounds, and if platelet levels do not stabilize in the coming days, the operation will have to be delayed a little. Although the doctor has assured us that this is not a problem, we hope not to delay, so that we can continue as planned and see Fabi cured as soon as possible.
Otherwise, he feels good, his energy is incredible, as is the strength he shows. He's always on the job, and he even has a specific face every time he gets ready to do another thing, and we're having the most fun. In addition, we proudly say that at one year and 11 months he has already learned all the letters, including their order, knows the numbers and colors, so mentally he develops excellently and we hope that the experience with cancer does not affect him, but only makes him stronger.
Thank you once again for joining us! We're moving forward with confidence that Fabi will get better.
Fabi was discharged today after the transplant. A difficult month of days, during which he felt good, then bad, then worse. There would be a lot to say and describe the extremely difficult situation of those days, but we are focused on success and the important thing is that it has gradually recovered, and now it is alive again.
Stage 3 is the operation, on August 17, immediately followed by radiotherapy.
Until then, he will still have regular check-ups at the hospital, but we will also try to enjoy the nice weather outside.
Another important news is that, after much effort, we have been approved for the transplant, amounting to 144,282 euros! This amount is settled by the DSP and not by CNAS and therefore does not go through the S2 form.
Thus, it remains to keep you informed of the costs, payments, Fabi's status and the amount collected and to post as soon as we have news.
Thank you very much for joining us, we embrace you and wish you all the best in the world!
Fabi is going through a very difficult period a week after the stem cell transplant, as the doctors told us it will be. We thought that the worst was over and that if he didn't feel bad in the first few days after the transplant, that's the way it will be, but it looks like we were wrong. Doctors had to put the food probe on him three times, because during the night, after episodes of heavy vomiting, he had a fever. Mounting the probe is very difficult and scares him very much, which is why he has lost the confidence gained with great weight towards the doctors and nurses who enter the ward. He doesn't eat anything and just wants in his arms, including at night, wakes up every 10 minutes and if we're not there he gets even scareginated.
On the bright side, because we want to continue with positivism, is that doctors say that these things always happen after transplantation and that Fabi's situation is one "on schedule", they have no cause for concern because his tests came out well (not great, but nothing out of the ordinary for a child who has just gone through such a difficult procedure) , and that there are no other indications that vital parts of the body, such as the liver, are affected, which is common. In addition, there was no eczema on his skin or sores in his mouth, but he had a fever, so he started taking antibiotics again. We hope that the next few days will see improvements. The doctors said this situation would take about a week.
So, despite the problems, things are going "standard" and we're on schedule. —
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Yesterday Fabi did the investigations and post-chemotherapy tests. The doctors assured us once again that the metastases have not returned, that the main tumor has shrunk significantly and that its evolution is very good, and if it continues to the same way (meaning both to respond well to treatment and to have no interruptions and delays of the proposed treatment), the chances of survival can increase to 70%. It's a stem cell transplant, a procedure that will weaken him a lot physically. But we trust his physical and mental strength.
In 25 days 7287 SMS messages were sent to the number 8832 FABIAN message
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First, Fabi has completed all 8 proposed chemotherapy cycles!!!
And, YES - it still feels very good, despite the situation. But we can't help but worry about what's to come. We know that this chemotherapy is only a small part of the treatment. Next (in a few days) the stem cell transplant accompanied by that high dose chemotherapy That I was telling you about in previous posts. This is extremely aggressive, his body will be weaker than ever, will be even more prone to infections. Then the operation will follow to remove the tumor, or part of the remaining tumor. Then radiotherapy, immunotherapy... All through March 2022.
So in a few days there will be high dose chemotherapy plus transplant. Many tests will be done before this in which it is hoped that the metastases have not resurfaced from the last scans that showed their disappearance at the time. Hopefully everything will be OK because a relapse would complicate things very much.
During this period, Fabi has alternating states. Like negative things, he eats quite a bit because of the treatment - we are still lucky because he compensates with powdered milk, being used to drinking a lot at night.
In addition, her eyelashes and eyebrows have almost completely fallen. He has afte in his mouth, he's agitated a lot of times and with unpredictable behavioral changes.
I-I is often afraid of the medical staff entering the ward, but at other times it is extremely friendly with it. Other times he is extremely cute, kissy and loving. What impresses us a lot is that he is very physically strong. That is why we hope to support future interventions well.
Until then, we will allow ourselves - however - to enjoy the end of chemotherapy. The first treatment proposed is ready. An enormous step towards Fabi's healing.
And we would like to thank you once again for everything you do and have done for Fabi. It remains to keep you informed of the following procedures until the end of treatment.
A wonderful weekend to have!
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* SMS number 8832 is valid from 17 MAY 2021 to 14 JUNE 2021. The amount allocated to the case is 2 Euro. No VAT is charged on subscription donations. In Telekom ,Orange and Digi Mobil networks, for prepaid cards, VAT was withheld when purchasing the credit. For donations on prepaid cards, in the Vodafone network, users do not pay VAT. Number offered free of charge with the support of the Save a Heart Association
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I'm back with energy! Fabi checked in today for the next cycle of chemotherapy - the 6th and resumed his usual activities in the hospital: exploring the corridors and breaking the rules (joke, he's a good boy, a chair on the table does not count). The doctors are satisfied. Its evolution is a good one, as I have written before, the metastases have disappeared, the main tumor has shrunk a lot, and if not unforeseen things occur, in about a month and a half it will most likely do the stem cell transplant along with the administration of a chemotherapy "high dose", a complicated procedure with many adverse effects, and only after that will follow the operation to remove the tumor. Until then, there are three cycles of conventional chemotherapy left and we remain optimistic that Fabi will successfully overcome them. Another news (this time not related to Fabi) is that in 5 days the caesarean section is scheduled to help baby Peter become the new member of our family. We'll keep you updated on that, too, obviously.
Hello, dear friends. Today, in about 3 hours, Fabi will be discharged from the hospital after successfully completing the chemotherapy round number 5.
There were small problems (an allergic reaction on the skin, accidental removal of the needles from the infusion, fever due to a virus, implicit isolation in the hospital room without the possibility of going out to play in the aisle, as before), but they were overcome with brio.
Fabi remained equally cheerful and active. He's a real example of a fighter.
Good evening everyone! We'll come back with good news about Fabi's condition. After the scintigraphy done a few days ago, no bone metastases are observed, which is incredible. His young and strong body reacts well to chemotherapy. From what we've been told, at this point the tumors are no longer fixed to the bones, but appear to be very diffuse, and for this reason it received zero score, the best of all there is. In addition, the main tumor has shrunk. Yesterday, the doctor barely felt it. We're confident.
In addition, it is very active, as you can see from the videos. He knows best how to reorganize things through the hospital, and the world already knows him. It is very important that he continues to have a good mental state, and we are doing everything we can to make this happen.
Today he has completed the 4th cycle of chemotherapy out of the 8 scheduled before surgery to remove the tumor, and tomorrow he will be discharged again.
Thank you very much for joining us!
A quiet evening to have!
We would like to inform you that Fabi's condition seems to be progressing well, with no adverse effects from the chemotherapy round he just completed. The metastases behind the eye seem to back down, which doctors also confirmed. The eye looks almost normal at this point, and in addition, the tumor in the abdomen appears smaller. Tomorrow morning he will do the scintigraphy, which will see in more detail his condition and which will determine the treatment plan that he will have to follow from now on. We promise to keep you up to date as before.
We'll be back with the latest news about Fabi's condition.
After the second cycle of chemotherapy, Fabi was discharged and is currently at home (i.e. in France, at the accommodation we have found at the moment). Every day we have to go to the hospital for an injection to protect him against infections, because they can be very dangerous in his situation, and in addition he has to do blood tests twice a week to determine whether or not he is in aplasia. Unfortunately, any change in health can be an emergency, so Fabi should be protected from any cold or infection no matter how small.
In the meantime, he behaves like any child his age: he is cheerful and put on the whispers, goes better and has energy. We know that things will not always be the same as they are in the present and that there will be periods when he will feel very sick and weak after chemotherapy, but at the moment we are enjoying his overflowing energy.
Also, as we already knew, but we are being confirmed every day more and more, we have noticed that Fabi is not so passionate about age-specific toys, but more about buttons, technology or lights. While other children play outside with various toys made available by the staff of our accommodation, he wants to be taken to the elevator to press the buttons and climb up, then go upstairs, in the kitchen wants to try endlessly the water kettle, microwave or coffee machine, likes to put the key in the door or open the boots. He has a special character, a very strong personality and exposes his grievances extremely vocally. Although it is difficult, we are proud of him and we are sure that his physical and mental strength will help him overcome this disease.
This Saturday he will be admitted again for the next cycle of chemotherapy, and we will keep you up to date with all subsequent stages. Thank you once again for all your support. Have a nice day and spore in all!
At the age when all children should push their toys around the house, Fabi pushes her stage with the chemotherapy infusion through the hospital ward.
He's still a happy child, but the disease grinds him on the inside. Doctors in France have told us that such a disease generally heals (and without relapses) 50%, with the possibility that this percentage will increase if complications do not occur in the course of treatment (fever, infections of any type, colds), which will lead to a different approach and delay the administration of the initial proposed treatment.
In the event of a relapse, however, the chances decrease to 10%. In order for this not to happen, Fabi must complete treatment at Gustave Roussy Hospital, where he has the best chance of this disease fully recovering and recovery is complete.
Costs remain extremely high, despite obtaining the S2 form. There are many parts of the treatment, together with maintenance procedures, follow-up checks, hospital days, etc. that are not covered by the Romanian Insurance House. To do this, we need to continue the fundraising campaign for Fabi.
We also kindly ask you to continue to "share" the group and Facebook page "Unite for Fabi" so that we can share its story with as many people as possible.
Thus, Fabi will be able to laugh and continue to enjoy, to love, to play, to be happy for a lifetime.
He'll be able to walk again, send you "kisses" again, to say "bye" with the happiness that is read in his eyes.
He will find his love in life, travel the world, explore new territories. It will enjoy the sun, rain, mountain or sea.
He will have great dreams and great experiences.
And you will be grateful a lifetime.
I arrived in France last night, and today Fabi has his first medical check-up. Until then, a picture goes to the waiting room
We have good news: we received the S2 form from the National Health Insurance House. It allows us to go to France and guarantees that some of the expenses for Fabi's treatment will be covered by the Roman state.
Unfortunately, this form was only issued for a period of one month, when the duration of treatment, according to documents received from France, is estimated at 12 months.
That basically means that every month we have to ask for a new form. We have been told that not all costs will be covered by the CNAS, but it is not possible at this time to know what is covered and what is not covered, but only when the new forms are issued on a monthly basis and at the end of treatment we will know this.
We still need you! Right now we're getting ready to go, hold our fists so we can get there as soon as possible! Thank you very much and we will keep you up to date with everything that happens, in the hope that in the future we will have more clarity!
We wish you a beautiful evening!
For reasons related to the protection of personal data we decided to blur the names and signatures on the document, remaining only the stamp of the institution.
We get angry about things that aren't important: that it's the house, that all the walls are stained with food, that we're tired, or that we don't have time for ourselves anymore. All of this doesn't matter.
That's all we want: to be healthy. Let the house be true, let the walls be stained by food, let us be tired and let us not have time for ourselves. Just to know that the naughty Fabi is going to get better.
After a month in the hospital, during which time he was given a long period of investigation to establish the diagnosis, the first cycle of chemotherapy was done and then treatment and post-chemotherapy monitoring, Fabi arrived home. It was decided to discharge him because the tests look good given the situation, he eats better and his general condition is improved. He should return to the hospital to start his second course of chemotherapy on March 31, but hopefully we can go to France before this date and start treatment there. It's hard to describe the feeling of happiness I experienced seeing him at home and seeing his reactions. He was so happy to see his house and his toys, and he tried to do everything he did before he was admitted. On his return home, he even managed to take a few steps. And the most beautiful reaction he had was when he saw Daddy, with whom he played and laughed with lust. Then he got tired and crouched down in the position where the most protected child feels.
Yesterday morning Fabi started to fall out of his hair so we had to cut his hair. Hair loss is one of the best known effects of chemotherapy, we knew it would happen, but the psychological impact exists. However, Fabi's condition is slightly better. He has moments where he laughs with lust. Today he sat down a few times for a few seconds. He eats better, he looks livelier. Our hope is that chemotherapy works. Progress will be small and will be followed by periods of regression, but we are currently enjoying the small improvements we are seeing now. If all goes well, at the end of the week Fabi will probably be discharged until the next cycle of chemotherapy. However, we hope to be able to leave before it starts, otherwise we will have to extend our stay in Romania by about 2-3 weeks and further delay the treatment it actually needs. We trust that you will continue to support us in this fight.
Good evening everyone,
We received the official estimate from France, and the cost of treatment is much higher than the 500,000 euros we estimated in the original post.
Thus, the cost per estimate amounts to EUR 731,639, without including the actual operation, which will be carried out in another hospital.
It's an enormous amount, but we hope some of it is covered by CNAS. We don't know how much. We can't guess, it's all up to them. Tomorrow we hope to be able to file with CNAS, along with all the paperwork, then we'll keep you updated. In the FILES section I also uploaded the quote, in case you have the curiosity to look over it.
Until then, we remain positive and we still need your support. Thank you once again for helping so much to save our dwarf.
Thank you so much for putting your trust and soul into our son's case. We will always be grateful for this.
Latest news on Fabi: Sunday finished the first cycle of chemotherapy. He is now still hospitalized for monitoring. The effects of chemotherapy can be both good and bad for the body, as it can also attack healthy cells.
In recent days, Fabi has also started eating some solid food. He also stood for a few seconds. An extraordinary achievement for him. He tries to be cheerful, from time to time he tries to smile. He was playing with his mobile phone, and although when he was healthy we tried to limit it as much as possible, we have now dropped the rules. He can play with anything he wants. We also have to take care of his mental health, not just his physical health. He certainly misses home and his usual activities and doesn't understand why he's only staying in a small hospital room with his mother alone, and why an army of doctors and nurses are subjecting him to so many medical procedures. But he is a strong little boy and will not remember. We're just hoping he's not in a lot of pain.
The next few days are critical. We will try to get from the Health Insurance Fund the S2 form, which could help us with some of the enormous amount. We'll keep you updated. We hope to be able to submit the full file on Monday or Tuesday at the latest, and the answer should be received within 5 working days. So we were hoping that we would not encounter any other bureaucratic problems and that we would have an answer in about 10 days.
Thank you again. We hope that the help given will return to you 10000000 times, every time you need help.
We'll keep you updated. Until then, please stay with us and make this case as popular as possible.
Sunday afternoon ended the first round of chemotherapy, at the moment we do not see much difference, we hope to see bigger changes for the better the coming days. Today he was a little more alert, he stayed awake for a long time, he was more interested in toys and the phone. He's been sick because he's already vomited a few times, but he's still trying to be respectful and make PA with his hand and send nurses in and out. Instead, don't laugh, don't eat solid food, don't stand up. Yesterday he had a new blood transfusion, unfortunately it's one of the many things we'll have to get used to. We are convinced that our Fabi is strong and will get over this ordeal.
Dearly beloved, we return with information about Fabi's condition. Wednesday afternoon began chemotherapy, the first cycle lasts four days continuously, so it will end today. We are soon to see its effects. We hope to improve his condition without too many side effects.
But Fabi is a fighter and will pass well everywhere!
Thank you for joining us!
For a week our world has returned to 180 degrees. What should have been one of the happiest periods of our lives, given that we are expecting another little boy in May, has become a nightmare. Fabi, our only one-and-a-half-year-old dwarf, received a grim diagnosis: stage IV neuroblastoma, with bone metastases, in the spinal cord and in the cranial box. This type of cancer cannot be treated in Romania, because unfortunately it has a very aggressive and rare strain. His only chance is to reach Paris at the Gustave Roussy Institute, specializing in neuroblastoma. But the costs are enormous, so we started a fundraiser in the hope that we would be able to reach the necessary amount. Please join us on the long road ahead, so Fabi can get better. Thank!
Dear friends, you've probably already gotten used to the many posts we've been making about our nice, likable little boy, Fabian aka Fabi.
Unfortunately a few days ago we found out that our Fabi has serious health problems, specifically a type of cancer called stage 4 neuroblastoma. The sky fell... But unfortunately, the disease is real and we have decided that there is no possibility of remaining passive to the disease, but we will have to fight to defeat it.
Obviously we have done a lot of research, concluding that the best treatment is at a clinic in France that has successfully dealt with many such cases. Unfortunately the condition is serious, the cancer is very aggressive.
We will start a fundraiser in this regard, we have created both a group of donations, auctions, etc., and a Facebook page to do so.
Please be with us, any help being welcome, and obviously a massive "share" to our group posts would help us enormously.
Let's make this incredible kid who's changed our whole life good!
Campaign started on: 05.03.2021
First name: Fabian
Age: 1 year and 6 months
Required amount: 500000 euro (estimated amount we expect payment quote from France)
Gustave Rousy-France treatment will be performed
He is Fabi, he is 1 and a half years old and an extremely loving and curious child. Until a few days ago he was also very energetic. Fabi is fascinated by everything that has buttons. Don't you know how to use the coffee machine? Fabi will certainly get to the bottom of it. Lately, however, he refused food completely, including milk or water, and was very listless and had a bruise in his left eye. We went with him to the doctor, where we were suggested more thorough tests. Following an abdominal ultrasound we discovered a large tumor formation, comprising the aorta and blood vessels. As a result, he was immediately transferred to Pediatrics 2, the oncology ward in Cluj Napoca, where he is currently with his mother who is 28 weeks pregnant. Hard days followed, in which he had blood transfusions, medullary punctures, MRI, biopsy, blood tests, finally being confirmed with a cruel diagnosis: NEUROBLASTOM grade 4, the most aggressive form of the disease, with bone metastases, to the spine and cranial box. During this time his condition deteriorated rapidly. He doesn't walk anymore, he sleeps a lot, he doesn't eat almost at all, he's sad and unfortunately he's going through terrible pain. At a year and a half, fate has decided that our Fabi will fight a hard fight. We started to do more research and the doctor told us to go for treatment abroad. There are not many hospitals specializing in neuroblastoma, but fortunately there is a chance at the Gustave Roussy hospital in Paris. Our child can be saved! It's Fabi's chance to live. It's going to be hard for him, months to come, maybe even years of tough recovery, extremely strong chemotherapy cures, radiotherapy, immunotherapy, stem cell transplantation and other similar procedures, but Fabi is strong. From discussions with other parents whose children have or have had neuroblastoma, the costs are enormous, both in France and in other countries. Our child's life costs around 500,000 Euros, followed by recovery costs, regular checks and other tools designed to make him completely well and the cancer not to recur. This is an amount beyond our financial powers, but we have seen how miracles have been performed with the help of each of us. Since time is very limited, we have started a fundraising, followed in parallel by the submission of the dossier to THE CNAS, in the hope that they will at least partially cover this amount. In the days to come, we will find out from the hospital in France the exact amount. Until then, we want to start fundraising campaigns to receive treatment in France as soon as possible, with the tumour and metastases severely putting his life at risk even at this time. Please help us return Fabi's childhood!
Donations can be made:
Entity Name: Association "SALVEAZA O INIMA"
Tax Registration Code: 31015982
Bank Account (IBAN):
RON Account: RO05BTRL00701205W82870XX
Euro Account: RO28BTRLEURCRT00W8287001
USD CONT: RO68BTRLUSDCRT00W8287001
SWIFT CODE: BTRLRO22
BIC CODE: BTRL
Banca Transilvania Botosani
Please specify for bank transfer the name of the child -FABIAN BARLEA