Suleiman: The Brave Little Boy Who Defied a Thousand Fears Before His First Breath. Hyn
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.
Yara Croft: The Baby Fighting One of the Rarest and Deadliest Disorders in the World.3583
Yara Croft was just three months old when she had her first seizure — a moment that would change the course of her young life and the lives of her family forever. Her mother, Abby Croft, recalls the sinking feeling in her stomach as she noticed her usually alert and lively daughter had grown unusually lethargic. But it was Yara’s left eye, slowly bulging and failing to respond properly, that finally made Abby realise something was seriously wrong.
“She’s blind and has epilepsy,” the doctors told Abby at John Hunter Hospital in New South Wales. “It was a complete shock to the system, and it wasn’t something we were prepared for.” The little girl was diagnosed with Developmental and Epileptic Encephalopathy (DEE), a severe form of epilepsy, alongside her blindness. “The doctor said, ‘Yes she’s blind and yes she’s got epilepsy, but she’ll probably grow out of that,’ and then he just walked off,” Abby said.
Despite the initial advice to treat the condition with early intervention, the Crofts’ journey was only beginning. While DEE affects around one in every 200 children in Australia, Yara’s case was far more complicated. After months of testing and consultations, she was diagnosed with GRIN-1, a neurodevelopmental disorder so rare that only 75 cases have been documented worldwide. The disorder can cause severe epilepsy, developmental delays, movement disorders, spasticity, feeding difficulties, and behavioural issues — and in Yara’s case, she displayed nearly every symptom.
“She got an extreme dose of everything,” Abby explained. “She has no muscle tone, can’t hold her weight, she’s blind, has trouble eating, and suffers from relentless seizures.” By the age of 14 months, Yara could experience up to 100 seizures per day. Each episode placed her at high risk of sudden death. “Honestly, we are very lucky to still have her at the moment,” Abby said. “I know that very much short of a miracle… she’s probably not going to make it unless we can keep her safe until research catches up.”
The family’s struggle has been compounded by their rural location. Living on a farm in Yarrowyck, about 31 kilometres west of Armidale, means that even in emergencies, access to specialised care is limited. “On a good run, we’re still an hour-and-a-half from the hospital,” Abby said. “Sometimes when she gets really sick she stops breathing. We’ve been lucky that every time this has happened, we were able to get to Sydney. If it had happened at night at home, she would have died.”
Yara’s seizures are only part of the challenge. Because she is blind, lacks muscle tone, and cannot feed or hold herself independently, Abby and her partner must provide constant care. The family is left juggling the needs of their other children, their farm, and the unpredictable nature of Yara’s condition. “If I uproot everything here, then I have nothing… I’ll have no farm or livelihood and probably still no baby in the end,” Abby said. “I haven’t been able to work properly in months because I can’t leave her with anyone. No one wants to look after a baby who randomly has seizures and stops breathing.”
The lack of research and clear medical guidance has left the Crofts in the dark. Unlike families dealing with more common conditions, where treatment pathways are well established, there is very little information on GRIN-1. “If you go to the hospital with cancer, they will outline the course of action and the timeline for treatment,” Abby explained. “With this, you have no idea. There’s no light at the end of the tunnel. It’s a very challenging place for us to be in.”
Despite the uncertainty and fear, the Crofts remain committed to providing Yara with the best possible care. Every day is a careful balancing act — managing medications, monitoring her seizures, ensuring she eats, and keeping her as safe and comfortable as possible. “Someone with GRIN-1 can have a somewhat normal life,” Abby says, citing research. “But the severity varies greatly, and in Yara’s extreme case, it’s a constant battle.”
For Abby and her family, hope comes in the smallest victories. Every time Yara smiles, responds to touch, or completes a basic movement, it feels like a triumph. But every day is tinged with anxiety, knowing that a single seizure could be life-threatening. Their lives revolve around vigilance, intervention, and unwavering love.
Yara’s story is a stark reminder of the challenges faced by families with children suffering from ultra-rare conditions. It highlights the importance of research, early intervention, and specialised medical support, particularly for disorders that have only recently been identified or remain poorly understood. Each day is not guaranteed, yet the Crofts continue to fight, to protect, and to cherish the moments they have with their daughter.
“Life is unpredictable, and we are constantly adapting,” Abby said. “But we will do everything in our power to keep Yara safe and loved. She is our miracle, and we will make every day count.”
Yara Croft may be one of only 75 people in the world with her condition, but her courage, and her family’s unwavering dedication, stands as an inspiring testament to resilience in the face of unimaginable challenges. Every seizure, every emergency, and every small milestone is a reminder that hope, love, and determination can endure even in the most difficult circumstances.
Through it all, the Crofts continue to advocate for awareness, research, and support for children like Yara, hoping that future families will not feel as isolated or helpless. Their message is clear: each child is precious, every moment matters, and sometimes the smallest victories are the most extraordinary.
