The Girl Who Lives in Pain: Masha’s Story and the Fight to Give Her Just One Gentle Day 867
When most people think about childhood, they imagine scraped knees that heal, loud laughter echoing across playgrounds, hugs that come without fear, and bodies that bend, jump, run and rest without thought. But for Masha, childhood is something very different. Her world is wrapped in gauze and soaked in antiseptic. Her toys sit untouched because the slightest pressure can rip open her skin. Every movement, every touch, every breath is a reminder that her body is an open wound.
Masha is one of the children called “butterfly kids” — a poetic name that hides a brutal reality. These children are born with a condition called Epidermolysis Bullosa (EB), which makes their skin as fragile as the wings of a butterfly. But unlike butterflies, they don’t get to fly. They fight to survive inside a body that cannot protect them, a body that turns soft fabric into knives and gentle touch into fire.
For Masha, nothing is simple. There is no such thing as wearing a sweater without bleeding. There is no running, no bumping into furniture, no careless joy. Every inch of her skin can blister, peel, tear, or burn with the slightest friction. Most of her day is spent in bandages — not the kind a child gets for falling off a bike, but layers upon layers of sterile dressings, wrapped tightly around her limbs, her torso, her neck, her fingers, even her eyes at times.
This is not a temporary condition. There is no cure, no promise of recovery, no treatment that will “fix” her. There is only management — endless, exhausting, emotionally crushing care designed not to heal her, but to help her survive.
And yet, she smiles.
Every wound takes hours to clean. Every day begins with pain, ends with pain, and offers no break in between. Her skin does not grow the way most people’s skin does — instead, it breaks down faster than the body can repair it. Even inside her mouth, ulcers form where food rubs against soft tissue. Her esophagus becomes scarred, and sometimes she cannot swallow without agony. Her parents cannot hug her tightly. She cannot be carried without special padding. Even sitting still can cause new wounds to surface.
Her mother describes the worst part not as the physical care, but as the sound that fills the room when dressings must be changed. “She screams until she has no more strength to scream,” she says. “Then she whispers, ‘Please stop, Mama,’ and I have to keep going because if I stop, she will get an infection.”
Her father says something different: “I pray that one day she’ll just forget the pain. Even once. Just a day. A day to feel like a child.” But that day never comes.
Because when the dressings are finally changed, when the ointments are applied, when the creams and gels and pain medication have done what they can, the countdown begins again. Within hours, the wounds reopen. By nightfall, there are new ones. And by morning, the process must start all over again.
Children like Masha are sometimes called “butterflies” because their skin is delicate, but in truth, they are warriors. Every day is a battle against infection, dehydration, exhaustion, sepsis, and despair. There is no room for carelessness. There is no room for life as we know it.
The costs are devastating, not only emotionally but financially. The safest bandages, the ones she needs to keep infection away and protect exposed skin, cost more than her parents can afford. One roll can cost more than a week of groceries. Masha cannot reuse a single dressing. Once it touches a wound, it becomes contaminated and must be thrown away. The creams that go beneath the bandages, the pain medication, the sterile tools, the special clothes — all of it costs more than most families make in a month.
There are government programs, but they cover only a fraction of what is needed. There are hospitals, but they cannot cure her. There are specialists, but they can only help her cope. Genetics, not medicine, decided her fate.
Even so, there are small moments of joy. When the pain is slightly less, Masha loves to draw. She draws butterflies — hundreds of them, sometimes. She uses the brightest colors she can find. When someone asked her what the butterflies were doing, she said, “They’re flying away. They don’t hurt when they fly.”
In her drawings, she is never in bandages. She has long hair, no wounds, and no fear of touch. Sometimes she draws herself holding her parents’ hands, walking barefoot in the grass. She has never walked barefoot in her life. Grass would tear her skin.
Once, someone asked her what she wanted to be when she grew up. She didn’t say doctor or artist or teacher. She said, “I want to be someone who doesn’t hurt.” Not “I want to get better.” Not “I want a cure.” Just freedom from pain. That was her dream.
Doctors say EB is one of the most painful conditions on earth. But what they don’t always say is that caring for a child with EB is its own form of suffering. Parents of butterfly children live in a world built from fear and exhaustion. They learn to treat wounds so deep they can see muscle beneath torn skin. They check fevers constantly, knowing that infection can kill within days. They sleep sitting up, one ear always alert for their child’s cries. They give up careers, friendships, hobbies, and anything that pulls time away from care.
And still, they say they are the lucky ones — because their child is alive.
Not all butterfly children survive childhood. Many do not live past teenage years. The constant cycles of wounds, healing, tearing, and re-tearing lead to aggressive forms of skin cancer. The body cannot keep defending itself. Internal organs become compromised. The pain becomes too much.
Masha’s parents know this. They know that unless research moves fast enough, they will outlive their daughter. And yet, they hold hope like a candle in the dark. They raise money. They join studies. They tell her story because they must. They cannot give her healthy skin, but they can give her a voice.
The world rarely sees children like Masha. They do not attend school or play in parks. They do not sit in restaurants or visit playgrounds. Most people never learn that they exist at all. EB is rare, and rare things are often ignored. But she exists — and she matters.
And she still finds moments to laugh. During dressing changes, her mother sings songs to distract her. Sometimes, Masha sings along, even if she cries at the same time. Her father tells her jokes, and she forces a smile, because she knows it makes them feel less afraid. She takes the pain, wraps it in courage, and somehow chooses joy again and again.
That is what makes her extraordinary.
Her parents say she is their teacher — that she shows them what strength really looks like. Not loud, not victorious, not triumphant, but quiet, steady, and full of grace. Every day she survives is an act of defiance. Every smile she gives is a miracle.
She is fragile, but she is unbreakable. And that is why her story must be told.
Not because it is beautiful, but because it is true.
Not because it asks for pity, but because it asks for help.
Not because she is weak, but because she is powerful.
Her life is a scream against silence — a reminder that even the smallest voice deserves to be heard, especially when it cries from pain the world has never felt.
Masha cannot be cured today. But she can be helped today. She can be protected. She can be comforted. She can be given the gift of gentler tomorrows — even if they are still filled with wounds.
Because sometimes, hope is not a cure.
Sometimes, hope is a bandage that doesn’t stick to the skin.
Sometimes, hope is one day of less pain than the day before.
Sometimes, hope is simply knowing that someone out there cares.
And if the world listens long enough, maybe — just maybe — her wings will finally get the chance to open.
Not in heaven, only. But here. In life.
Where she belongs.
Born From Her Heart - 66
He wasn’t born from her body — but he was born from her heart.
When Yehya’s biological mother gave birth to triplets and could not care for all three, it was his aunt who stepped forward and said, “I’ll raise him as my own.” She never married, never had children of her own, and never once looked back. From that moment on, every breath she took was for him.
For thirty years, it was always just the two of them — mother and son in every way that mattered. She woke him for school, prayed for him before bed, and carried the quiet pride of a woman who had built her whole world around one small boy. Each night, before she closed her eyes, she would whisper the same words into the dark:
“Allah yarda ʿalayk.”
“May God be satisfied with you.”
People around them didn’t understand. They said she spoiled him. When he failed out of university, they said she had wasted her life on a boy who would never amount to anything. But she never believed that. She kept praying the same words, over and over, as if her love alone could rewrite his destiny.
And in time, it did.
Determined to make her proud, Yehya changed paths and became a nurse — just like her. He wanted to carry her legacy in his hands, to live the life she had once lived. When his relatives came home from the hospital saying, “Yehya took care of us so well,” her eyes would shine with tears. For her, that was everything — to know that the son she raised with love had become the kind of man the world would praise.
With his first salary, Yehya helped her buy a small house. It wasn’t much, but it was theirs — a home built on decades of sacrifice, prayer, and devotion. For two precious years, they lived there together, sharing quiet mornings and long conversations. She met his daughter, Zainab — named after her — and saw the life she had prayed into existence finally unfold before her eyes.
Then, before the war came, she passed away — suddenly, quietly, in his arms. No pain. No fear. Only peace.
“If you had asked her how she wanted to die,” Yehya said softly, “she would have said, exactly this way.”
And in that still moment, holding the woman who had given him everything, Yehya realized something: every prayer she had ever whispered had reached Heaven. Every word had been heard.
Because love like hers — love that asks for nothing, love that gives everything — never goes unanswered.
