Esme was born in July 2020, during a time when the world was unusually quiet. Her mother’s pregnancy had unfolded entirely during lockdown, with fewer appointments, less reassurance, and more uncertainty than most expectant parents experience.
From the beginning, something seemed off. Esme struggled to feed and had difficulty gaining weight. Week after week, community nurses monitored her closely and eventually diagnosed her with failure to thrive. It was worrying, but no one yet knew the real reason her tiny body was struggling. When Esme was 11 months old, a lingering cough led her parents to seek medical help. What seemed like a simple illness quickly escalated. She was diagnosed with bronchiolitis and admitted to hospital after her oxygen levels dropped. Days passed, then a week — but her condition didn’t improve.
Further tests revealed a devastating discovery. An X-ray showed Esme’s heart was enlarged. Doctors then detected a heart murmur that had gone unnoticed since birth. An urgent echocardiogram followed, revealing the true cause of her struggles: Esme had been born with a congenital heart defect called atrioventricular septal defect (AVSD).
She needed open-heart surgery. Because of an active infection, doctors were forced to delay the operation. For nearly two agonizing weeks, her family waited, trapped between fear and hope, knowing time mattered. Finally, just ten days before her first birthday, Esme was taken into surgery. There were no guarantees. Surgeons didn’t know if her heart valve could be repaired or if it would need to be replaced. In the end, they succeeded in repairing it — sparing Esme from further major surgery for many years.
After the operation, doctors closely monitored her heart rhythm. For a time, she relied on a temporary pacemaker. On the day she turned one, the wires were removed — and almost instantly, Esme showed signs of her old self returning. It felt like a second chance at life. In total, Esme and her family spent six and a half weeks in hospital.
Today, Esme is three years old. To anyone who meets her, she looks like any other joyful, energetic toddler. Few would guess the battle her heart once fought. She runs, plays, and laughs freely — and proudly shows off the scar on her chest, affectionately calling it her “wonder line.”
Esme’s story is a reminder that some of the strongest hearts are the smallest — and that survival sometimes depends on persistence, timing, and a love that never gives up.
Huxley’s journey began long before he was born.
At the routine 20-week scan, a moment most parents look forward to, our lives quietly split into a “before” and an “after.” It was there that doctors diagnosed Huxley with Hypoplastic Left Heart Syndrome (HLHS). In a matter of minutes, excitement turned into fear. We were told the reality with brutal honesty: only around half of children with HLHS survive all three required heart surgeries. Even then, the surgeries are not a cure — they are a way to buy time. A heart transplant could still be part of his future.
The months that followed were heavy with uncertainty. Every day of the second half of pregnancy carried anxiety, but also determination. We chose hope, even when it felt fragile.
At 39 weeks, Huxley arrived via a planned C-section, weighing a strong 8lb 2oz. He looked perfect — but he wasn’t well. There was no moment of holding him close, no quiet introduction to the world. Within minutes, he was taken straight to intensive care and placed on a ventilator. His dad and I watched from a distance, already learning what it meant to love him while letting go.
Before he was even 24 hours old, Huxley underwent his first procedure — a septostomy — creating an opening between the chambers of his heart to keep him alive. I hadn’t even met my son yet. When I finally did, he was a day old, deeply sedated, surrounded by machines, wires, cannulas, and alarms. We were told to focus on one hour at a time.
And slowly, something incredible happened.
Hour by hour, day by day, Huxley began to show us who he was. Within five days, he was breathing on his own without oxygen support. We held him for the first time. We saw his eyes. He met his big sisters, Scarlett and Aria. In the middle of fear, there was light.
At just eight days old, Huxley faced the first of three major open-heart surgeries: the Norwood procedure. Walking him down to theatre was one of the hardest moments of our lives. As we kissed him goodbye, I remember feeling an overwhelming sense of anger. No parent should have to leave their baby knowing their chest is about to be opened.
The surgery lasted 11 long hours. When we finally saw him again, he was almost unrecognisable — swollen, grey, his chest left open to protect his heart. Recovery was critical. Three days later, he was rushed back into surgery for a blood clot on his heart. The words “we need to operate now or he will die” are ones no parent ever forgets.
Once again, Huxley fought his way through.
Thanks to extraordinary surgeons, doctors, and nurses, his chest was closed two days later. A week after that, he moved from PICU to the cardiac ward, where we began training to take him home — tube feeding, medications, monitoring his weight, CPR, and learning to recognise every warning sign.
At five weeks old, Huxley finally came home. But the relief was short-lived. He couldn’t tolerate feeds, and within two days we were back in hospital. Together with his medical team, we decided it was safest for him to remain an inpatient until his second surgery.
At four months old, Huxley underwent his second open-heart surgery — the Glenn procedure. It was shorter, smoother, and for a moment, everything seemed to be moving forward. Then came another setback: chylothorax, a rare condition causing lymphatic fluid to leak into his chest. His recovery stalled. We spent another eight weeks on the cardiac ward, facing complications including sepsis.
Just before Huxley turned six months old, we were finally told the words we had been waiting for — he could go home. This time, for real. It was during the height of the coronavirus pandemic, which added another layer of fear, but nothing compared to what we had already faced.
Today, Huxley is nine months old and thriving. Our home is full again. We are making memories we once feared we might never have. His journey isn’t finished — one more open-heart surgery, the Fontan procedure, still lies ahead, likely when he is between three and five years old.
The team at Southampton Hospital are our heroes. Time and time again, they saved our son’s life.
And Huxley? He is our proof that strength doesn’t always roar. Sometimes it’s a tiny heart that keeps beating against impossible odds. We are endlessly proud of him — our brave, joyful, beautiful boy who has already fought harder than most do in a lifetime. 💙
The Child We Waited For 10 Years, and the Fear of Losing Her Every Day
“We waited ten years for this child. And now, every single day, we live with the fear that he could be taken from us.”
For ten long years, Misha existed only in hope. His parents learned how to wait in silence. They learned how to smile at baby showers while swallowing their own grief. They learned how to pray without knowing if anyone was listening. Every year that passed without a child carved a deeper ache into their hearts, yet they never stopped believing that one day, somehow, their miracle would come.
When Misha was born, it felt as though the universe had finally answered them. He was perfect. Warm. Real. His mother remembers holding him for the first time, terrified to blink, afraid that if she did, the moment might disappear. His father watched in awe, overwhelmed by the fragile weight of the child they had waited nearly a decade to meet.
Misha learned to laugh. To run. To explore the world with the curiosity only a small child has. Their home filled with toys, bedtime stories, and the kind of ordinary happiness they once believed might never belong to them. They were finally a family.
Then came the fever. At first, it seemed harmless. A child’s illness. Something temporary. But the fever didn’t go away. Days turned into weeks. Weeks turned into months. His mother returned to doctors again and again, her instincts screaming that something was wrong.
“It happens,” they said.
“He’ll grow out of it.”
“Just wait.”
But a mother knows when waiting is dangerous. One evening, her husband looked at her and said quietly, “Get an ultrasound. Everything.” That decision changed their lives forever. She still remembers the doctor’s face—the hesitation, the silence, the way his eyes avoided hers. She remembers the screen. The word she never imagined would be spoken about her child. Tumor. Misha sat beside her, smiling, swinging his legs, unaware that his childhood had just been replaced by hospital rooms, needles, and fear. His mother held his hand and felt her world collapse.
What followed was a nightmare no parent is ever prepared for. Chemotherapy stripped his tiny body of strength.
Radiation stole his energy.
Surgeries came one after another.
Anesthesia became routine.
A bone marrow transplant pushed his body to its limits.
There were nights his parents stayed awake, listening to his breathing, terrified it might stop. Days when he was too weak to eat. Moments when hope felt impossibly far away.
And yet, it was Misha—the child—who became their strength. “Mom,” he would whisper, “everything will be fine.” A little boy comforting his parents while fighting for his life. Against all odds, Misha survived. Slowly, painfully, he recovered. He laughed again. He ran again. He dreamed of returning to kindergarten. His parents allowed themselves to believe that the worst was behind them—that their miracle had endured the storm.
For a while, life returned.
Then, quietly, the fear crept back in.
In September, test results began to change. Numbers shifted. Doctors grew cautious. By November, the words they dreaded most were spoken again. The tumor is growing back. Now, his parents watch Misha play, laugh, build towers, and dream—knowing that inside his small body, the disease is hiding once more. Every joyful moment is shadowed by fear. Every smile feels fragile. Doctors have been honest. After two relapses, Misha needs specialized treatment abroad to have a real chance at survival. That chance exists—but it comes at a cost his family cannot carry alone.
The amount required is 1,176,000 rubles. An impossible sum for a family that has already given everything—emotionally, physically, financially—to keep their child alive. They are not asking for comfort. They are not asking for sympathy. They are asking for time. Time for Misha to grow. Time to learn. Time to become the person he dreams of being.
Misha waited ten years to come into this world. He has fought through pain most adults could not endure. He deserves the chance to live. His parents stand once again at the edge of fear—not as fundraisers, but as a mother and father pleading for their child. “Please help us save our son,” they say. “Every donation, every share, every prayer brings us one step closer to keeping him with us.” This is not just a story about illness. It is a story about love that waited ten years to exist. About faith that refuses to break. About a child who deserves a future.
Huxley’s journey began long before he was born.
At the routine 20-week scan, a moment most parents look forward to, our lives quietly split into a “before” and an “after.” It was there that doctors diagnosed Huxley with Hypoplastic Left Heart Syndrome (HLHS). In a matter of minutes, excitement turned into fear. We were told the reality with brutal honesty: only around half of children with HLHS survive all three required heart surgeries. Even then, the surgeries are not a cure — they are a way to buy time. A heart transplant could still be part of his future.
The months that followed were heavy with uncertainty. Every day of the second half of pregnancy carried anxiety, but also determination. We chose hope, even when it felt fragile. At 39 weeks, Huxley arrived via a planned C-section, weighing a strong 8lb 2oz. He looked perfect — but he wasn’t well. There was no moment of holding him close, no quiet introduction to the world. Within minutes, he was taken straight to intensive care and placed on a ventilator. His dad and I watched from a distance, already learning what it meant to love him while letting go.
Before he was even 24 hours old, Huxley underwent his first procedure — a septostomy — creating an opening between the chambers of his heart to keep him alive. I hadn’t even met my son yet. When I finally did, he was a day old, deeply sedated, surrounded by machines, wires, cannulas, and alarms. We were told to focus on one hour at a time.
And slowly, something incredible happened. r by hour, day by day, Huxley began to show us who he was. Within five days, he was breathing on his own without oxygen support. We held him for the first time. We saw his eyes. He met his big sisters, Scarlett and Aria. In the middle of fear, there was light. At just eight days old, Huxley faced the first of three major open-heart surgeries: the Norwood procedure. Walking him down to theatre was one of the hardest moments of our lives. As we kissed him goodbye, I remember feeling an overwhelming sense of anger. No parent should have to leave their baby knowing their chest is about to be opened.
The surgery lasted 11 long hours. When we finally saw him again, he was almost unrecognisable — swollen, grey, his chest left open to protect his heart. Recovery was critical. Three days later, he was rushed back into surgery for a blood clot on his heart. The words “we need to operate now or he will die” are ones no parent ever forgets. Once again, Huxley fought his way through. Thanks to extraordinary surgeons, doctors, and nurses, his chest was closed two days later. A week after that, he moved from PICU to the cardiac ward, where we began training to take him home — tube feeding, medications, monitoring his weight, CPR, and learning to recognise every warning sign.
At five weeks old, Huxley finally came home. But the relief was short-lived. He couldn’t tolerate feeds, and within two days we were back in hospital. Together with his medical team, we decided it was safest for him to remain an inpatient until his second surgery. At four months old, Huxley underwent his second open-heart surgery — the Glenn procedure. It was shorter, smoother, and for a moment, everything seemed to be moving forward. Then came another setback: chylothorax, a rare condition causing lymphatic fluid to leak into his chest. His recovery stalled. We spent another eight weeks on the cardiac ward, facing complications including sepsis.
Just before Huxley turned six months old, we were finally told the words we had been waiting for — he could go home. This time, for real. It was during the height of the coronavirus pandemic, which added another layer of fear, but nothing compared to what we had already faced.
Today, Huxley is nine months old and thriving. Our home is full again. We are making memories we once feared we might never have. His journey isn’t finished — one more open-heart surgery, the Fontan procedure, still lies ahead, likely when he is between three and five years old.
