When you look at Orysia’s photos, the pain is evident without needing any words — it’s captured in her delicate smile and the weary eyes that have witnessed too much suffering. “Why her?” her father whispers. “Why did this happen to us?”
At merely 10 years old, Orysia has faced challenges that most adults could hardly fathom. Soon, she will undergo her 15th surgery. Despite this, her battle is far from over.
“Sometimes the pain is so intense,” her father shares, “she looks at me and says, ‘Daddy, I think I’m dying.’”
The Day Joy Turned to Fear
When Orysia’s parents discovered they were expecting a daughter, they were filled with joy. However, that joy quickly turned to fear when the doctor noted something unusual in the ultrasound. “Something’s wrong with her legs,” they were informed.
They were prepared to face challenges, but nothing could have equipped them for the reality that awaited. Upon Orysia’s birth, doctors identified multiple deformities: dislocated knees, deformed feet, and contracted arms. Genetic testing later confirmed the diagnosis — Larsen syndrome, a rare congenital disorder affecting joints, bones, and the spine.
“Our daughter’s mind was perfect,” her father states, “but her body became her worst enemy.”
Larsen syndrome is incurable. Without ongoing treatment and surgeries, it can severely damage the body — quite literally.
The Early Years: Learning to Walk Through Pain
In her first five years, Orysia underwent six surgeries on her legs. Each surgery was a struggle. Gradually, she began to stand and took her first shaky steps. Her parents dared to hope.
Then, without warning, everything changed. Orysia stopped walking, couldn’t lift her head, and found it hard to breathe. Doctors discovered a severe cervical spine deformity — her neck bones were pressing against her spinal cord.
“They warned us she could become paralyzed — or stop breathing altogether,” her father remembers.
Orysia was rushed to intensive care. Her condition was so dire that local hospitals could do nothing further. In desperation, her parents sought help from kind strangers, and thanks to their generosity, Orysia was transported to SJD Children’s Hospital in Barcelona, one of Europe’s top pediatric orthopedic facilities.
The Fight in Barcelona
Upon her arrival in Spain, Orysia was malnourished, weak, and barely able to breathe. Tests revealed that her lungs were functioning at just 20% capacity. Her neck was collapsing inward, and her spine was twisting so severely that every breath caused her pain.
“The doctors said that without immediate surgery, she would suffocate within months,” her mother explains.
Over the years, Orysia has endured:
- Three spinal surgeries, including the implantation of metal rods to stabilize her spine
- One leg surgery and multiple castings
- Cranial traction therapy to align her neck
- Intensive rehabilitation to regain strength
Currently, metal rods and screws are keeping her fragile spine stable — her literal lifeline. However, as she grows, these rods must be surgically lengthened every 9–12 months. Without this procedure, her spine will begin to deform again, endangering her lungs and heart.
“If her chest collapses,” her father states quietly, “she will die in agony. We cannot let that happen.”
Another Operation, Another Hope
In early 2025, Orysia returned to Barcelona for yet another surgery — her 15th operation. Doctors need to extend her spinal implants again and assess her severe leg pain, which now keeps her awake most nights.
“She barely sleeps,” her father shares. “She cries from pain even though she takes the strongest medication a child can have.”
The expenses for each surgery, hospital stay, and rehabilitation are staggering. For the Krainiak family, already emotionally and financially exhausted, this burden is overwhelming. Yet they have no choice — without this care, their daughter’s condition will rapidly decline.
A Bright Mind in a Fragile Body
Despite everything, Orysia continues to inspire those around her. She attends school in a wheelchair, which she operates herself with pride. She enjoys math and art, dreams of becoming a teacher, and speaks multiple languages.
“She’s so intelligent, so full of life,” her mother says. “She just wants to live — to learn, to make friends, to grow up.”
Her spirit shines through her pain. However, her future relies on ongoing treatment — and that treatment requires assistance.
A Father’s Urgent Request
“I never imagined I’d have to plead with strangers for help,” her father confesses. “But when your child looks at you and says, ‘Daddy, I don’t want to die,’ you’ll do anything.”
Every donation, every kind word, every prayer counts. It represents another surgery, another breath, another opportunity for Orysia to continue her fight.
This courageous little girl has already faced more than most will in a lifetime. But with your support, she can have what every child deserves — a life not defined by pain, but filled with possibilities.
💜 Please, help us save Orysia.
Your contributions can fund her life-saving surgeries and rehabilitation — and provide her with a future filled with hope instead of hospital walls.
“She wants to live,” her father says through tears. “Please, help us make that possible.”
