My pregnancy was going smoothly... I was sure nothing terrible could happen. But I was wrong—the worst was already ahead. 😢💔
When they told me at the second screening that the baby's head was slightly behind, I didn't pay it any mind. The doctors assured me everything was fine, that it was just a developmental issue. I believed them... I so wanted to believe them. 😔
Zakhar was born on his own, without complications. Small, fragile, but so long-awaited.
At the hospital discharge, they smiled at us and told us he was completely healthy. We lived happily—until exactly nine days after his birth.
That's when the phone rang that divided my life into "before" and "after." 😭
The neonatal screening was "questionable." We had another blood test.
A week of waiting... and then silence. I exhaled. But a week later, another call – now I need to donate blood, urgently, right now, a courier is already waiting to take it to Moscow.
I kept silent about everything. I was afraid to utter a word.
And I really hoped it was a mistake. That my child was just a child, not a patient. 😢
But at 26 days, Zakhar got sick for the first time. It seemed like a normal runny nose...
But for us, this was the beginning of a nightmare.
The pediatrician didn't even try to treat him at home – she immediately wrote a referral for hospitalization because they suspected primary immunodeficiency.
And then real hell began. 😭💔
They wouldn't let me into the hospital – "there are no beds."
They said: "If you don't give him up, he could die."
I handed over my tiny son to strangers and was left alone outside the hospital.
For five days, I lived in a car in the parking lot. For five days, I begged the doctors to let me in.
For five days, I listened to them explain to me that it was my "fault" that my child was sick. 😢
When they finally let me see him... I saw that Zakhar's skin was bloody from diaper rash, fungus was all over his body, and basic care was lacking.
A child with an immunodeficiency—and they were treating him like this! It wasn't just painful—it felt like the world was being destroyed before my eyes. 😭💔
The doctor looked at me coldly and said,
"Your child can't be helped. You have to accept it. He may not survive every illness."
Everything inside me screamed. I couldn't accept those words. I'm a mother. I won't bury hope as long as my son is alive.
And when I started researching for myself, I learned that children with PID need immunoglobulin replacement therapy. When I told the doctor this, she smirked in my face. But later, Moscow immunologists confirmed that immunoglobulin was urgently needed.
Thus began an endless journey:
Moscow—examinations, diagnoses, new pains, new discoveries.
And finally, the answer: Nijmegen syndrome.
A severe genetic disease that carries a monstrous risk of cancer and destroys the body from the inside. 😢
The only chance to save him was a bone marrow transplant.
I signed the paperwork immediately, despite being warned:
"He might not survive..."
But without a transplant, he definitely wouldn't survive.
And so began the wait for a donor... six months of waiting between life and death.
Six months, when I lived without breathing.
Six months, when my test results plummeted, and my hope along with them.
When I realized we simply couldn't wait any longer, I found a clinic willing to see us immediately. In Israel, they found a donor in two weeks—something they couldn't do in Russia for six months.
And in January 2025, we underwent the transplant.
It was the most difficult period in my son's life:
— vomiting for days,
— mucositis, bleeding mucous membranes,
— his body refusing to eat,
— pain that was relieved with morphine,
— endless tears. 😭💔
But Zakhar persevered.
The donor cells began to grow.
We dreamed of an end to the nightmare...
But now everything is crumbling again.
The chimerism test is dropping.
First by 6%. Then again. And again.
We tried everything—we stopped the medications, we transfused additional donor cells.
But nothing helps.
And if the decline doesn't stop... we face a second transplant.
And will his little body be able to handle it?.. I'm afraid to think about it. 😢
Right now, we can't leave the clinic—we need a chimerism test every week.
We're tied to the hospital as much as we are to breathing.
And the only thing that can give Zakhar a chance to continue fighting is treatment, support, and observation here in Israel.
The cost of the next stage of treatment is $13,200.
This amount is unaffordable for us.
But without it... I could lose my child. 😭💔
I beg you—help us.
Every day, every test, every percentage point—it's a fight for his life.
I so want to see him grow, laugh, and live without pain.
He's been through so much... He needs a chance. 😢🙏