FOMA AND EVGENIA: THE STRUGGLE FOR THE LIFE AND HEALTH OF A TEENAGER

Shalom. My name is Evgenia. I am a citizen of Israel. In my teenage years, I came to study under the Naale program, finished school, stayed in the country, and served in the army. Israel has always been a part of my life not formally, but in essence.

Due to family circumstances, I had to return to Russia. This decision was not simple and was not perceived as final, but it was there that I got married and gave birth to a son. His name is Foma, his Hebrew name is Rafael. Foma studied in a Jewish school, grew up in an environment where his origin and identity were never something secondary. I am raising him alone, he is my only child, and until May of this year, our life was ordinary, with familiar worries and plans.

On May 16, Foma called me from school and said that he felt strange and was losing his balance. I immediately went to get him and took him to a hospital that we considered reliable. There, they gave him a CT, MRI, tests and hospitalized him in the neurosurgical department. The doctor on duty informed me that he saw some kind of formation in the area of the spinal cord, but back then no one yet understood how quickly everything would develop.

On the morning of the next day, Foma was completely paralyzed from the solar plexus and below. Already on May 17, doctors made the decision to transfer him to neurology, where they gave the diagnosis of transverse myelitis. At the same time, not a single test showed the cause of what was happening, and the prescribed treatment gave no effect. I heard from doctors that medicine cannot always help, and that was the hardest thing at that moment.

We spent five months in the hospital. In June, a small shift appeared that gave hope, but from the beginning of July, Foma’s condition began to worsen again. During this time, he developed serious complications, including ossifying myositis and thrombosis. Despite this, we were transferred to a rehabilitation center, where the doctors themselves did not understand why this was done, since Foma required continued treatment, not recovery.

Later we were transferred to the RCCH (Russian Children's Clinical Hospital), where Foma underwent a long MRI. It was there that a neoplasm was discovered, after which the doctors came to the conclusion that treatment in Israel is the only real chance, and it is no longer just about recovery, but about survival.

After this, we continued examinations already in Israel. Foma underwent CT, MRI and a biopsy. The CT results showed that the internal organs are in order; however, the MRI revealed the presence of two tumors in the spinal cord area. One of them continues to grow upward and already now threatens the functions of the hands, which creates a risk of total loss of mobility.

For a short time, the condition was stabilized, and the opportunity appeared to leave the hospital for a little while. However, a few days later, Foma became sharply worse. Severe headaches began, examinations showed that excess fluid was accumulating in the brain. Doctors diagnosed hydrocephalus, a condition in which the outflow of cerebrospinal fluid is disturbed and intracranial pressure rises rapidly.

Foma urgently underwent surgery to install a ventriculoperitoneal shunt. This is the only effective way to stabilize the condition with hydrocephalus. The operation was emergency and necessary, as without it the consequences could have been irreversible. The installation of the shunt allowed to relieve the pressure and buy time, but it does not solve the main problem, since the tumors continue to grow and require further treatment.

In order to open a health fund (kupat cholim) in Israel, I had to pay the debt and a fine to Bituah Leumi. From the first day after this, all of Foma’s treatment is covered by the health fund, and this is a great relief, because it gives the opportunity to focus on medical decisions.

After consultations with doctors, the decision was made to start experimental treatment with the drug Pemigatinib. This is not a standard scheme and not a drug from the basic protocol. It is prescribed in situations when practically no other treatment options remain and there is a chance to influence the growth of the tumor.

I paid for the first package myself. It was my last money. After that purchase, I had nothing left even for basic daily expenses. I am not writing this to seek pity, but to honestly define the limits of my resources. A specialized nonprofit organization agreed to cover the second package. What will happen next, I do not yet know, because right now the most important thing is to understand how Foma will respond to the treatment.

Since May, I have not been working and remain constantly by my son’s side. At the moment, I am staying with a friend, but this is temporary and cannot continue indefinitely. I need help with the most basic things: renting an apartment near the hospital, medications that are not always covered, everyday expenses, and simply food. These are not extra comforts or savings for the future, but ordinary life that continues even in hospital corridors.

I cannot manage this on my own. Foma is my only child, and my task now is to do everything possible so that the treatment can continue and he has a chance.