They live their lives day to day, finding beauty in small moments as they create memories for their two young sons.
Six-year-old Mark, full of laughter and boundless energy, is the picture of health.
But his little brother — nineteen-month-old John — lives a very different reality.
“John brings light to us every day,” said Julie Gorodetzky, her voice calm yet filled with the weight of love only a mother can carry.
“We are enjoying the time he has left.”
We often talk about the importance of faith in our lives.
But faith, for Philip and Julie Gorodetzky of Kansas City, is not an abstract word — it’s the air they breathe, the strength that keeps them standing, and the reason they smile through tears.
Because faith is tested when you are the parent of a child with Type 2 Gaucher Disease — a rare neurogenetic disorder that affects just one in every 150,000 newborns.
It’s a cruel disease — one that strips the body of vital enzymes.
Without them, fatty substances build up inside cells and organs, slowly shutting them down.
There is no cure.
And the average life span for a baby born with this condition is two years.
John Gorodetzky is 19 months old.
“John is a very happy baby,” Julie told me, smiling through her tears.
And he truly is.
He laughs at his brother’s jokes.
He kicks his feet when music plays.
He gazes at his parents with eyes that seem to hold the wisdom of someone far older than his tiny body allows.
But behind every smile lies a fight invisible to most.
John suffers from scoliosis — his small spine curved in ways that make breathing a challenge.
He endures seizures that shake his fragile frame, and he is losing both vision and hearing.
Still, he smiles.
Still, he shines.
He also has Central Apnea, a condition that causes his breathing to stop, suddenly, for ten… twenty… sometimes thirty seconds at a time.
Moments that feel like eternity for Philip and Julie.
“John is hooked to oxygen by day and a BiPAP machine at night,” Philip explained.
“He is monitored 24 hours a day.”
There have been nights when alarms shrieked, when breath failed, when time stood still.
“There have been a few times we thought we lost him,” Philip said quietly.
“Each time we did CPR until the paramedics arrived,” Julie added.
And somehow, every time, John came back.
Every time, the little boy who shouldn’t have survived kept proving the world wrong.
Faith — unshakable, luminous, raw — is what carries this family through.
Where others might drown in despair, Philip and Julie have learned to see light in the darkest hours.
“We take life day to day,” Julie said.
“And we are blessed that John smiles all day long.”
There’s no self-pity in her tone.
Only gratitude.
Only grace.
“We value each day with John,” she continued softly, “and we know the Lord will give us strength.”
Their home in Kansas City is filled with laughter — not because things are easy, but because they choose joy over fear.
Every day, they take photos.
They read bedtime stories.
They play with bubbles and sing songs, knowing that each day is a gift, and each night is borrowed time.