There are stories that make you stop and think about the things you take for granted — the mornings that feel ordinary, the laughter that seems endless, the days that slip by without notice.
And then there are stories like the Gorodetzkys’.
A family who wakes up each morning knowing tomorrow is not guaranteed.
A family who has learned to measure life not in years, but in moments.
Because when your 19-month-old son is dying from a disease that affects just one in 150,000 newborns, faith becomes more than a word — it becomes the only way to breathe.
A Diagnosis No Parent Should Hear
When Philip and Julie Gorodetzky welcomed their son John, he looked perfect.
He had bright eyes, a round face, and the same tiny hands as his older brother,
Mark, who is six.
But what no one could see was that deep inside John’s body, something devastating was happening.
Doctors diagnosed him with Type 2 Gaucher Disease, a rare neurogenetic disorder that prevents the body from breaking down fatty substances. Those lipids begin to accumulate — first in the spleen and liver, then in the brain.
There is no cure.
There are no long-term survivors.
The average life span for a baby born with Type 2 Gaucher Disease is two years.
When the Gorodetzkys heard the diagnosis, the world seemed to stop.
“I remember just holding him,” Julie said softly. “He looked so perfect, so normal. It didn’t feel real.”
But reality came fast — seizures, loss of vision, hearing impairment, scoliosis, and something that terrifies every parent:
Central Apnea, a condition that causes breathing to stop for up to 30 seconds at a time.
“John is hooked to oxygen during the day and a BiPAP machine at night,” said Philip. “He’s monitored 24 hours a day.”
There have been moments when they thought it was over — moments when John stopped breathing and they performed CPR until paramedics arrived.
Each time, somehow, he came back.
And each time, his parents whispered the same words through tears:
“Thank you, Lord.”
Faith in the Fire
For most people, faith is an abstract idea — a word on a page, a Sunday sermon, a quiet prayer whispered before bed.
For Philip and Julie, faith is breath.
It is the steady rhythm that keeps them from falling apart when their son’s monitor beeps in the night. It is the strength that lets them smile when doctors remind them of the odds.
“We take life day by day,” Julie said. “And we are blessed that John smiles all day long.”
He does. Even with wires and tubes connected to his small body, John’s face radiates pure joy — the kind of joy that can only come from innocence untouched by fear.
“John brings light to us every day,” Julie said. “We are enjoying the time he has left.”
She paused, as if weighing every word. “We know the Lord will give us strength.”
The Brother Who Doesn’t Understand
Six-year-old Mark is healthy, full of energy, and devoted to his little brother.
He doesn’t fully grasp what’s happening — only that sometimes Mommy and Daddy cry, and that John needs “extra help.”
He loves making John laugh. He tells him stories about superheroes and teaches him how to clap along to music.
“Mark is our reminder of normal,” said Philip. “He gives us the laughter that balances the pain.”
Sometimes, when John has a good day, the family piles into the car and drives to the park. They sit under the sun, watching Mark run through the grass while John giggles in his stroller.
For a few moments, they get to be just another family.
Then reality returns — a cough, a beeping monitor, the reminder that even the simplest outing comes with risk.
A Perfect Example of “Patience in Affliction”
The Gorodetzkys’ faith has not erased their pain, but it has redefined it.
Julie often quotes a phrase from the Bible: “Be joyful in hope, patient in affliction, faithful in prayer.”
“John is the perfect example of patience in affliction,” she said, her voice breaking. “He teaches us every day what it means to trust completely.”
Their home, filled with medical equipment and prayer cards, feels both like a hospital and a sanctuary.
There’s exhaustion, yes — but also a peace that defies logic.
They have learned to let go of the “what ifs.”
“Tomorrow belongs to God,” Philip said. “We’re enjoying John today.”
The Weight of Every Breath
Living with a terminal illness changes everything about time.
For the Gorodetzkys, every hour feels sacred.
Every smile, every nap, every breath.
Julie keeps a journal — not to document milestones, but moments:
John’s first laugh.
The day he said “Mama.”
The night he fell asleep on my chest and I could feel his heartbeat against mine.
“These are the things I want to remember,” she said. “Not the machines, not the fear — the love.”
Hope Without Answers
Doctors see John every three months, monitoring his progression. There’s no real treatment to stop what’s happening — only ways to keep him comfortable.
Each visit brings new questions:
How much time does he have left?
What happens when his breathing gets worse?
What will it be like when he goes?
There are no answers.
So the Gorodetzkys stopped asking.
“We used to pray for healing,” Philip said. “Now we pray for peace.”
When Faith Is All That’s Left
There is a quiet strength in the way they speak about their son.
They don’t sugarcoat the reality — they know the statistics, the medical limits, the inevitable heartbreak that lies ahead.
But they also refuse to let fear have the final word.
“God gave us John for a reason,” Julie said. “He’s shown us what love really means.”
And perhaps that’s what faith looks like — not the absence of pain, but the courage to keep loving in the middle of it.
Finding Light in the Darkness
In many ways, John’s story is not just about tragedy — it’s about transformation.
He has changed the way his family sees the world.
He has turned ordinary moments into miracles.
He has drawn people closer — neighbors, friends, even strangers who follow their journey online.
They send messages of prayer, food, or simply love. Some say John’s smile reminded them to hold their own children a little tighter.
The Gorodetzkys have never asked for pity — only presence.
“Pray for us,” they say. “Pray for strength. Pray that we never take a single day for granted.”
A Love That Defies Time
When you ask them what the future looks like, they don’t talk about milestones or birthdays.
They talk about now.
About bedtime stories and lullabies. About the way John’s hand curls around theirs. About the laughter that echoes down the hallway, even when the machines are humming.
Every night, before they sleep, Philip and Julie whisper the same prayer:
“Thank you for today.”
Because they know — today is all they truly have.
The Boy Who Shines
John may never grow up to run through fields with his brother. He may never learn to ride a bike, or go to school, or blow out candles on his fifth birthday cake.
But in the short time he’s been here, he’s done something far greater.
He has shown the world what it means to live — not perfectly, not painlessly, but fully.
His laughter has become a lesson. His life, a testament to grace.
And as his parents hold him close, watching the rise and fall of his fragile chest, they choose faith again and again.
Because even when tomorrow isn’t promised, love still is.
And for the Gorodetzky family, that’s enough.
