Our Stories
Veljko Stojković (2021)
Veljko was born a healthy baby after a well-monitored pregnancy. Everything seemed perfect until the first postnatal problems appeared. In Serbia, doctors kept assuring us that everything was fine — that these were just prolonged colic, stomach pain, teething, or mild food sensitivities. We were told not to worry, that Veljko was a healthy child and that everything would pass with time.
So, we waited. But by the time he turned one, things had changed. He completely lost the ability to stand on his legs, could no longer sit, and began staring into space. Yet even then, we kept hearing that all was fine, that every child develops at a different pace.
Then, at only 14 months old, after his first MRI scan, we heard the words that changed our lives forever — our child had brain atrophy. Those were the hardest moments of our lives: the helplessness, the sleepless nights filled with worry, and countless questions without answers. Still, we made a decision — we would never give up.
Veljko’s battle began in his first months of life, when he faced challenges brought by a rare and complex condition. Since the age of three months, he has lived with gastrointestinal problems, pain, cramps, and difficulty with digestion. Around eight months, he began to lose the skills he once had — he stopped sitting, cooing, and smiling the way he used to.
We searched for answers wherever there was even the slightest hope. Along the way, we were fortunate to receive help from exceptional specialists from some of the world’s most respected medical centers — Mayo Clinic in Rochester (MN), Lurie Children’s Hospital of Chicago, laboratory teams from Atlanta, and Dr. Arthur Krigsman in Texas, known for his research and dedication to helping children with autism who also suffer from gastrointestinal disorders. Thanks to their knowledge — and to our persistence and daily fight — Veljko began to make progress.
Today, our little boy walks independently. He no longer needs orthotic braces, loves going for walks, enjoys nature, and brings joy and inspiration to everyone around him.
Although he still uses a gastrostomy tube for feeding, the 4:1 ketogenic diet has significantly changed the course of his condition and brought many improvements. With carefully chosen medications, therapies, and the dedication of his therapists, his abnormal eye movements have nearly disappeared, his motor skills have improved, and Veljko can now hold objects, play on his own, sleep peacefully, and wake up with a smile.
Behind that smile are years of therapy, tears, fear, and hope — but above all, immense love and an unshakable belief that no fight is in vain. Veljko has taught us that miracles do exist — not in sudden, dramatic changes, but in small, quiet steps forward. In every look, every hug, and every word he speaks, we feel gratitude and joy.
When we were told that Veljko had brain atrophy, we faced words no parent ever wants to hear. But we refused to let that be the end of his story. We learned that understanding the difference between atrophy and delayed myelination can change everything — and that sometimes, the truth about a child hides behind a mistaken diagnosis.
Our story is not over. But today, when we see Veljko walking, playing, laughing, and saying his first words, we know we’re on the right path. And more than that — thanks to Veljko, many other children have found new hope, and their parents have found the strength to keep fighting for their little heroes.
Because every child deserves a chance.
And every chance is worth the fight.
Viktor Putica
Viktor was born from a healthy, wanted pregnancy. We awaited him with so much love and anticipation, and it was as if he knew the world outside would be hard for him—so he stayed a little longer in my belly, preparing for what awaited him. Instead of congratulations and smiles, we were met with sad looks and the words that our baby would be immediately transferred to intensive care. A few minutes later, a dermatologist appeared and uttered a diagnosis I had never heard before —epidermolysis bullosa.
As someone who has always believed that there’s a solution for everything, I asked the doctor: “What can we do? Is there a cure, a surgery, or a therapy? Will Viktor live like other children?”
She just shook her head. In that moment, my whole world collapsed.
I admit, in those first days, I wanted to run away from everything, to somehow erase reality and wake up in another story. The doctors said little, and the internet was merciless. There was no time to prepare—we had to become Viktor’s shield immediately.
We couldn’t give him healthy skin, but we could be his armor. We learned how to change his bandages, how to touch him without hurting him, how to hug him so he wouldn’t feel pain.
The country where he was born offered no proper support, and by the time he was one month old, Viktor already had his first passport. Our journey toward treatment began at the EB Center in Salzburg, where he had his first surgery (a circumcision) due to painful wounds and infections. Soon after, before his first birthday, he underwent his first esophageal dilation, and by the age of three, he had gone through three such procedures—all endured with incredible strength.
Now, when his days pass without pain, he smiles and uses every moment to show us how happy and grateful he can be, even if he cannot express it in words.
We knew we had to keep moving forward. A new hope appeared—Vyvek therapy—located on another continent, far from our family and friends, but close to what matters most: a chance to save Viktor.
At the beginning of 2024, we arrived in the United States, in the state of Maryland. There, we found what we had dreamed of: expertise, compassion, and the care of doctors who restored our faith. Viktor became a patient at the EB Center at Cincinnati Children’s Hospital and at Children’s National Hospital in Washington, D.C. To say we were impressed by everything we learned there and the help we received would be an understatement.
Viktor is not alone—he has a younger brother, Todor, who carries the same gene but, fortunately, does not have the disease.
Unfortunately, in addition to epidermolysis bullosa, Viktor was later diagnosed with autism, which explained many things and brought new challenges.
Our biggest struggle now is how to maintain balance between these two conditions, which seem to compete with each other, taking turns trying to prevail. But we know the path we’re on is the right one, even when the pace changes. And so, as long as he breathes and fights, we will never give up.
