Bruno’s Story – A Fragile Life Full of Hope.2185
At first, it was just two faint lines on a pregnancy test — barely visible, but enough to fill our hearts with joy. The first ultrasound, where we saw our tiny baby on the screen; the first gentle kicks inside my belly — every little moment felt like a miracle. The pregnancy went smoothly, and we counted down the days with excitement, imagining the moment we would finally hold our baby boy in our arms.
Everything seemed perfect — until it wasn’t.
In the 37th week of pregnancy, during what should have been one of the last routine checkups, everything changed. The doctor’s expression turned serious. I was diagnosed with
polyhydramnios, a condition where there is too much amniotic fluid. Suddenly, the calm happiness of waiting turned into panic. Because of the risk of fetal hypoxia, an emergency cesarean section was necessary to save our baby’s life.
That’s how Bruno came into the world.
He was given 8 out of 10 points on the Apgar scale, but he had trouble breathing. For the first 12 hours of his life, he had to be connected to oxygen. We were terrified, watching our fragile newborn struggle to take every breath. But slowly, his condition improved. The day we could finally hold him in our arms and leave the hospital, we thought the worst was behind us.
We couldn’t have been more wrong.
The First Signs of Trouble
The early days at home were filled with a mix of love, exhaustion, and quiet concern. Bruno didn’t want to eat. He struggled to latch properly, often spitting up milk. His body felt stiff at times, and his movements didn’t seem quite right.
We tried to tell ourselves that every baby develops differently — that he just needed time. But as weeks passed, the gap between him and other babies grew more and more visible.
He wasn’t gaining enough weight. He didn’t reach for toys like other infants. His muscles were either too tense or too weak. The typical milestones — sitting up, crawling, babbling — simply didn’t come.
We began the long, exhausting journey of medical consultations. Neurologists, pediatricians, physiotherapists — everyone had theories, but no one had answers. Month after month passed, and we were no closer to knowing what was wrong with our son.
Finally, when every other explanation had been ruled out, the doctors suggested genetic testing. It was our last hope — and, as it turned out, our worst fear.
The Diagnosis That Changed Everything
The results were devastating: Angelman Syndrome.
We had never heard of it before. We sat in the doctor’s office in silence, listening to words that didn’t seem real — “genetic disorder,” “severe developmental delay,” “no speech,” “seizures.”
Angelman Syndrome is caused by the loss of function of a specific gene in chromosome 15. For Bruno, it means that he will not develop like other children. He may never walk on his own. He will never speak in the way we all take for granted. And epilepsy — one of the syndrome’s most feared symptoms — could appear at any moment.
It felt as though the ground disappeared beneath our feet.
That night, we held Bruno in our arms for hours. We cried, prayed, and promised him one thing: we will never give up
.
Life with Angelman Syndrome
Every day since that moment has been a fight — one that demands strength, patience, and love beyond measure.
Bruno’s daily life is filled with therapy sessions, doctor visits, and medical equipment. He cannot walk, so he needs a
special wheelchair, a standing frame, and orthopedic braces. His communication is nonverbal, so we’re introducing alternative communication methods, helping him express himself with gestures and symbols.
Physiotherapy, occupational therapy, speech therapy — each one is essential to his development. Every small progress — a stable gaze, a grasp, a smile — feels like a victory.
But this constant care is exhausting, both emotionally and financially. Without continuous rehabilitation and the right support, Bruno’s chances of gaining independence would fade. And yet, in every moment of difficulty, his smile reminds us why we keep fighting.
A Ray of Hope
For a long time, Angelman Syndrome was considered incurable. But recently, research has brought a glimmer of hope. Scientists are developing a gene therapy aimed at treating the root cause of the disorder. The medication has already entered
phase 3 clinical trials, and early results are promising.
This possibility — that one day Bruno might be able to say “Mom” or “Dad” — fills our hearts with hope we never thought we’d feel again.
Until then, our mission is to keep him as healthy, active, and strong as possible — to prepare his body and mind for the day when medicine might finally give him a chance at a better life.
Our Plea
We are fighting not only for Bruno’s progress, but for his future — for the possibility of a world where children like him can thrive.
Please, help us keep that hope alive. Every donation, every share, every gesture of kindness brings us closer to giving Bruno the life he deserves.
He may be small, but his courage is immense. And with your support, we can make sure his story is one of strength, resilience, and love that never gives up.
Because even when life takes everything from you — hope is what you must protect the most. 💙
“When Headaches Led to a Diagnosis: Ezra’s Fight With Brain Cancer”.1505
“Don’t be afraid to ask for help, even if you don’t think you need it yet. It’s better to have help and not need it than to need help and not have it.”
These words carry a weight that only families who have walked through the valley of childhood cancer can truly understand. They come from Rhiannon, the mother of six-year-old Ezra, who was diagnosed with medulloblastoma — a type of brain tumour — in June 2024.
Ezra’s story is shared during Childhood Cancer Awareness Month, not only to shine a light on his personal battle but also to remind other parents to trust their instincts and never be afraid to seek answers.
Before his diagnosis, Ezra’s life looked much like that of any other six-year-old. He was playful, bright, and full of curiosity. He wore glasses due to a “lazy eye,” and he was under the care of their local hospital for regular monitoring. For a long time, nothing seemed unusual or particularly worrying. In fact, Ezra’s prescription had recently improved, and he had been given a new pair of glasses.
It was only a couple of weeks after receiving those new glasses that he mentioned something small but nagging: a headache. At first, it seemed innocent enough. Children get headaches from time to time, especially when their eyes are adjusting to new lenses. The pain went away on its own, and life continued as normal.
But then, another headache came the following week. And another after that.
At first, Rhiannon assumed it might be related to the new glasses. After all, they had just received a letter from the hospital scheduling a follow-up to check how he was getting on with his new prescription. It made sense at the time to link the two.
But the headaches grew more frequent. Ezra was experiencing them about twice a week. And it wasn’t just the headaches anymore. Sometimes, when he woke up, he felt sick. It wasn’t every day, and it usually passed quickly, but it was enough to raise questions in Rhiannon’s mind.
Then came the eye appointment that changed everything.
Ezra’s dad took him to the hospital, where they checked his vision again. To their shock, Ezra struggled badly with the eye chart. He had done well before, but this time, he could hardly read it. Concerned, the hospital decided to refer him for another appointment to reassess the prescription.
Two weeks later, it was Rhiannon who took him. The appointment was at 1:30 in the afternoon, a moment she will never forget.
That day, Ezra couldn’t read the board at all. Every attempt was wrong. His eyes, which had seemed manageable with glasses just weeks earlier, were now failing him completely. The doctor examined his eyes and immediately noticed something troubling: a swollen optic nerve. Without hesitation, Ezra was referred to paediatrics. A porter escorted them to the ward.
On the ward, Rhiannon met the consultant, who began asking a series of questions.
“Has he had headaches?”
“Yes,” she answered.
“Has he been sick?”
“Yes, sometimes.”
“Has he lost weight?”
“Yes.”
“Has he been more clumsy than usual?”
“Yes.”
With each answer, the knot in her stomach grew tighter.
The consultant wasted no time. Ezra was sent for an MRI scan. The waiting felt like an eternity, but the results came quickly.
When they returned to the ward, the news hit like a thunderclap. Ezra had a brain tumour.
The words landed heavy and final. Life, as they had known it, fractured instantly. Rhiannon remembers the moment vividly—the sterile hospital room, the sounds of machines, the way the world seemed to tilt sideways. One moment, she had been worrying about glasses and headaches. The next, she was being told her son had a life-threatening tumour.
The family was told they would be transferred to Alder Hey Children’s Hospital as soon as the ambulance arrived. Suddenly, everything accelerated. The small problems that had consumed daily life just hours earlier felt trivial compared to this new reality.
The journey to Alder Hey was the beginning of an entirely new chapter. One filled with surgery, treatment plans, consultations, and the endless uncertainty that cancer brings.
For Rhiannon, looking back, the signs had been there. The headaches, the sickness, the vision problems, the clumsiness—all of it added up. And yet, no parent ever wants to imagine that these symptoms could point to something as devastating as a brain tumour.
This is why she now urges other parents: do not dismiss your child’s symptoms. Do not hesitate to ask for help. Even if you think it’s something minor, it’s always better to ask and be reassured than to ignore the signs and discover too late that it’s something serious.
“Don’t be afraid to ask for help, even if you don’t think you need it yet,” she says. “It’s better to have help and not need it than to need help and not have it.”
Ezra’s diagnosis of medulloblastoma has reshaped their lives in ways they never could have imagined. The word “cancer” is terrifying enough for any family, but when it’s spoken about a child—your child—it is unbearable.
Medulloblastoma is a fast-growing tumour. It requires immediate intervention. For Ezra, this meant facing treatments and hospital stays no six-year-old should ever have to endure. His world shifted from school and playdates to scans and IV drips, from playgrounds to hospital wards.
Yet, even in the middle of this nightmare, there are glimmers of resilience. Ezra’s spirit shines in the way he faces each day. His courage, though he may not understand the full scope of what he’s fighting, inspires everyone around him.
Rhiannon shares their story not to seek pity, but to spread awareness. Childhood Cancer Awareness Month is more than a ribbon or a campaign—it’s a reminder that behind every statistic is a child like Ezra, a family like hers, whose lives have been torn apart by three words: “It’s a tumour.”
She wants people to know the signs. To understand that headaches, sickness, changes in vision, clumsiness—these can be more than just childhood quirks. They can be warnings.
And she wants people to know the strength of these children. The way they endure surgeries, medicines, and pain with more bravery than most adults could ever muster.
Ezra’s journey is far from over. The road ahead is long and uncertain, filled with treatments, challenges, and moments of both hope and despair. But his story is also one of love—of a family refusing to give up, of a community rallying around them, of a little boy showing the world what it means to fight.
As Rhiannon says, “It’s better to have help and not need it than to need help and not have it.”
Ezra’s story is a testament to the importance of listening to children, trusting instincts, and never being afraid to demand answers. It is also a testament to resilience, to hope, and to the extraordinary courage of one little boy.
And though the battle is fierce, Ezra is not fighting alone.
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