“Hubcio’s Story: A Little Boy Born with His Mother’s Disease — and a Battle They Must Fight Together”
I wish I could say that my pregnancy with Hubcio was the happiest time of my life.
I wish I could tell you it was filled with peace, joy, and excitement.
But it wasn’t.
Years before, doctors had told me that I would never be able to have children
.
Then I suffered two miscarriages.
Each time, a little part of my heart broke beyond repair.
So when, for the third time, I saw those two pink lines on the pregnancy test, I cried tears of both joy and fear.
Finally, I dared to hope again.
But that hope didn’t last long.
Because only a few weeks later, I learned that I was sick — very sick.
And, even worse, my unborn child had already inherited my illness.
\
A Genetic Curse
Before my son was born, I underwent genetic testing.
That’s when I first heard the name of the condition that had quietly shaped my entire life without my knowing it:
Gorlin-Goltz Syndrome — a rare, inherited genetic disorder.
Until that day, I had never even heard those words.
But as I sat there with the test results in my hands, I learned what they meant.
This syndrome causes a dramatically increased risk of both benign and malignant tumors, including brain and bone growths.
And it is passed directly from parent to child.
Suddenly, everything in my family history began to make sense.
A few years earlier, my young niece had died of medulloblastoma, a malignant brain tumor.
Now, I realized that what took her life was the same thing that ran silently in my own blood.
All through my pregnancy, fear consumed me.
Would I miscarry again?
Would my baby inherit the disease?
Would I lose another child before I ever got to know him?
A Fragile Beginning
When Hubcio was finally born, he was tiny but perfect — a miracle I had waited for all my life.
Holding him for the first time, I thought the nightmare was finally over.
But it was only just beginning.
Shortly after his birth, doctors performed routine scans.
The results shattered my world.
Two tumors were found in his little head.
I remember the cold, sterile hospital room.
The words echoed over and over:
“There are two masses. We’ll need to monitor them closely.”
I felt like the ground had vanished beneath my feet.
How could my newborn baby — the child I had prayed for — already carry such a heavy burden?
The Long Wait
From that moment, we were placed under constant medical supervision.
Every visit was filled with fear — every scan, every blood test, every whispered conversation between doctors.
When Hubcio was just seven months old, they began to plan brain surgery.
After long discussions, the doctors decided to wait and watch.
We prayed it was the right choice.
And for a while, it seemed like it was.
At each follow-up, the news grew better.
One tumor disappeared completely, and the other began to shrink.
For the first time in months, we dared to breathe again.
We celebrated tiny victories: a smile, a laugh, a clean MRI result.
We told ourselves the worst was behind us.
But it wasn’t.
The Fear Returns
Now, three years later, that same fear is back — stronger than ever.
This spring, during a routine check-up, doctors found that the remaining tumor was growing again.
An MRI in June confirmed our worst nightmare: it had returned aggressively.
Hubcio needed
immediate surgery.
There was no time to wait.
On June 24, our little boy was taken into the operating room for removal of the tumor from his left hemisphere and cerebellum.
The surgery lasted hours — the longest hours of our lives.
When the doctors finally came out, I could barely breathe.
They told us the tumor had been successfully removed and sent for testing.
Then came the results — and with them, the collapse of our fragile world.
It was medulloblastoma.
The same kind of brain cancer that had killed my niece.
My knees gave out beneath me.
For a moment, I couldn’t see, couldn’t hear, couldn’t think.
The walls closed in, and I felt the life drain from my body.
All I could see was my son — my precious boy — lying in that hospital bed, so small, so fragile, with a bandage across his head.
The Unbearable Weight of Love
The days after surgery were the hardest we’ve ever faced.
Every time he opened his eyes, every time he whispered, “Mommy,” I fought to hold back tears.
When you see your child’s head covered in scars, when every beep from the monitor feels like a countdown, you realize that fear and love are the same thing — they both consume you completely.
I wanted to trade places with him.
I wanted the disease to be mine again, not his.
But that’s not how life works.
The Next Battle
Tomorrow, Hubcio will be admitted to the oncology ward.
There, doctors will determine the next steps of treatment.
Based on what we already know from family history, it’s likely that he will need treatment abroad — possibly in Germany or Switzerland — where advanced therapies for medulloblastoma are available.
But such treatment costs hundreds of thousands of euros.
We don’t have that kind of money.
No parent ever does.
That’s why we’ve started a fundraising campaign — not because we want pity, but because we want a chance.
A chance for our son to live the life he deserves.
The Little Boy Who Loves Life
Despite everything, Hubcio is still just a three-year-old boy.
He loves cartoons, blocks, and playing hide-and-seek.
He doesn’t understand words like “malignant” or “recurrence.”
He only knows that he wants to go home and play with his toys again.
When I look at him, I see pure innocence — a child who has no idea that he’s in the fight of his life.
He looks at me and says, “Mommy, when can I go to the park?”
And my heart breaks, because I can’t give him a simple answer.
A Mother’s Promise
I have already lost too much.
I cannot lose him too.
So I will fight with everything I have — with every tear, every sleepless night, every ounce of strength left in my body.
Because I waited too long for him.
Because he deserves to grow up, to laugh, to live.
We need help.
Financially, emotionally, prayerfully — in every way possible.
Every donation brings us closer to life.
Every act of kindness gives us hope.
From a Mother’s Heart
When I first learned that I carried this genetic disease, I thought it was my own private battle.
I never imagined I would pass it on to my child.
And yet, here we are — two hearts beating against the same cruel fate.
But I refuse to believe this is how our story ends.
I refuse to let this disease take my son the way it took my niece.
Please, help us write a different ending.
Help us give Hubcio the chance to grow up.
To live.
To dream.
Because no child should begin life with a battle this big —
and no mother should ever have to beg for her child’s tomorrow.
