When Suleiman was born on March 19, 2019, the world should have opened gently for him—a mother’s arms, a father’s tears of joy, the warmth of a new life beginning. Instead, his first moments were filled with urgency, fear, and a race against time. His mother held him for only one fleeting minute before he was whisked away, blue, struggling to breathe, and rushed into intensive care. The little boy she had dreamed of meeting for months was suddenly fighting for his life.
The fear wasn’t new. In the second trimester of pregnancy, doctors had discovered that Suleiman had a congenital heart defect—specifically interrupted aortic arch and VSD (ventricular septal defect). These conditions meant his tiny heart was structurally incomplete, unable to circulate blood properly, and would require immediate medical intervention after birth. Still, nothing could prepare his parents for the reality of seeing their newborn son surrounded by machines, wires, and the quiet hum of life-support.
At just one week old, on March 28, 2019, Suleiman was taken into the operating theater for major open-heart surgery. The procedure was expected to be long, but no one knew just how long the day would feel. For
ten agonizing hours, his parents sat in the hospital waiting room—fear rising and falling like waves, their minds alternating between blank numbness and terrifying possibilities. Every minute felt like an eternity.
Finally, the surgeons emerged and delivered the words that would carry them through the next moments:
The surgery was a complete success.
It felt like a miracle. Yet the fight was far from over.
When they saw him after surgery, Suleiman was still critically ill. Tubes covered his tiny body. A ventilator breathed for him. His chest rose and fell with the help of machines. His mother described her heart as “heavy”—a weight of love, fear, and helplessness all at once. But even then, hope was there, faint but real, beating alongside her son’s struggling heart.
Thanks to the extraordinary team at Royal Brompton Hospital in London, Suleiman slowly began to heal. Three weeks after surgery, his oxygen support was reduced. But something still wasn’t right. Every time the oxygen was removed, he struggled again. Days turned into weeks; weeks into months—
three months passed, and still he needed help breathing. His doctors began to suspect deeper issues beyond his heart.
Feeding also became a struggle. The trauma of surgery had affected the way Suleiman swallowed, and he couldn’t safely drink milk without risking aspiration. A
feeding tube was placed through his nose into his stomach to make sure his little body received enough nourishment to grow. The difficulty of watching him depend on tubes, unable to eat or breathe properly on his own, was overwhelming for his parents.
He was transferred to Great Ormond Street Hospital, a place known for unraveling the most complex medical mysteries. There, doctor after doctor, test after test, they searched for answers. Finally, after countless investigations, blood work, and examinations, they discovered the underlying cause of Suleiman’s many struggles:
He had CHARGE Syndrome — a rare genetic disorder that appears during early fetal development and affects multiple organ systems. It occurs in only 1 in 10,000 births.
Suddenly, every piece of Suleiman’s journey made sense.
CHARGE explained his chronic lung disease.
It explained his airway abnormalities and weak swallow.
It explained the feeding issues.
His chronic respiratory struggles.
His developmental delays.
His far-sighted vision.
His cleft palate.
His underdeveloped ear and severe hearing loss.
And even the coloboma—the holes present in both of his eyes.
His parents finally had answers… but knowing the truth did not make the road ahead any less difficult.
Yet, in the middle of all these diagnoses, there is something far more powerful about Suleiman than the list of medical challenges he faces: his spirit.
Despite everything—heart surgery, breathing difficulties, feeding struggles, hearing loss, vision issues, and daily therapy—Suleiman is described as
bright, energetic, brave, and endlessly happy. His personality shines through every obstacle. He laughs, he plays, he explores, and he fills every room with a spark that cannot be dimmed. He is thriving—not in spite of his challenges, but alongside them.
To his family, Suleiman is not defined by CHARGE Syndrome or any of his medical labels. He is defined by his strength. His resilience. His ability to face fear with courage, and hardship with joy. His journey is a testament to the incredible power of a child’s heart—even one that needed rebuilding.
Suleiman teaches everyone who meets him that life’s challenges may be enormous, but the human spirit can be even greater. His story continues to inspire, offering hope to families everywhere who are facing diagnoses that feel too heavy to bear.
Because Suleiman shows, every single day, that even the smallest warriors can carry the greatest light.