Charlie’s epilepsy was severe, with multiple seizures every day. Bristol Children’s Hospital is one of only nine children’s hospitals across the UK performing highly complex surgeries for infants and teenagers alike. Charlie was one of those patients.
In 2016, Charlie underwent a major brain surgery performed by neurosurgeon Mike Carter and his team, a procedure that would completely change his life. We spoke to Charlie’s mother, Carley, about their experience at Bristol Children’s Hospital and why she believes supporting children like Charlie is so important.
“When they told us that Charlie—our little ‘Bear’ as we call him—had epilepsy, our hearts sank. We just wanted to hold him tight and take away all his pain. It was a relief, though, to realize that our instincts had been right all along,” Carley recalls.
Charlie was about two years old when we noticed something was wrong. He would often stare blankly, his eyes glazing over while the corners of his mouth drooped. Although he remained mobile, we had to protect him from himself. The situation worsened over time.
High fevers or breathing difficulties seemed to trigger Charlie’s seizures. Imagine playing football or running around a playground only to collapse into a seizure each time. A normal childhood was becoming increasingly difficult for Charlie.
One Saturday, Charlie had tonsillitis. For some, it would be a minor annoyance, but for him, it worsened his seizures. They occurred continuously, prompting us to rush him to the Emergency Department at Bristol Children’s Hospital.
Seeing Charlie’s condition, medical staff quickly arranged an EEG (electroencephalogram) to monitor his brain activity. After the EEG detected abnormal brain waves, we received his official diagnosis. I remember thinking, “What now?”
Months of medication followed, but an MRI eventually revealed a brain tumor. I asked the consultant, “Does my son have cancer?” She wasn’t certain. Suddenly, we were living our worst nightmare as parents.
The hospital staff discussed treatment options, one of which was brain surgery. Could we allow a four-year-old to undergo such a procedure? A call from our hero, Dr. Carter, brought the reassurance we desperately needed. To prevent future complications, he recommended surgery to remove the affected brain region. He was confident it could be done safely. And so, our journey toward epilepsy surgery began.
In November 2015, Charlie and I spent a week at Bristol Children’s Hospital. He was taken off medications and had a cannula placed in his arm. With another EEG attached to his head and cameras watching him 24/7, the team monitored Charlie constantly to see if brain activity matched his seizures.
Being confined to the same room for a week was difficult for Charlie. The Play Department brought a mini trampoline so he could expend some energy indoors. They also brought modeling clay and visited daily to play, giving him a sense of normalcy amid medical monitoring.
After a week of testing, Charlie’s records were sent to local and national boards to decide whether he qualified for surgery. The waiting period was stressful and nerve-wracking.
As Christmas approached, we received a call that his surgery could proceed. It was scheduled for January 4, 2016. Suddenly, everything felt very real and frightening.
During a routine check-up with Dr. Carter, he made us feel at ease. He explained that Charlie had a 70% chance of being seizure-free, though he might need lifelong medication. We knew the surgery carried risks, but we felt it was the only option.
I requested that Dr. Carter call me halfway through the surgery. Although this was unusual, he agreed, understanding how much it would help ease our anxiety.
On the day of surgery, Charlie, his father Adam, and his grandmother arrived at the hospital, unaware of what lay ahead. When Dr. Carter greeted Charlie warmly, shaking his hand and speaking gently, the compassion and kindness he showed were unforgettable.
Adam and I walked Charlie into the operating room. I held him until he fell asleep, connected to multiple lines and monitors. Once he was under anesthesia, I was left to pace the hospital, filled with anxiety and fear. Five hours later, I received the call we had been waiting for: Charlie was okay. The slight delay made the wait feel longer, but I felt relief knowing he was in the best hands.
Four hours later, Adam and I were allowed to see Charlie. He was covered in bandages and connected to numerous tubes, including a drip line on his head. Nothing could have prepared me for the sight. My heart ached. I couldn’t help but blame myself, questioning if I had done something wrong during pregnancy. Of course, it wasn’t my fault, but as a mother, guilt was inevitable.
Charlie endured several difficult days and nights, but by Friday, our little warrior was discharged. He was still sore and swollen, but he could continue his recovery at home.
Five years later, Charlie is seizure-free and no longer requires medication. It feels like a dream come true. While he may have some challenges and requires closer monitoring than his peers, he now enjoys a seizure-free life—a reality we never thought possible.
Charlie is now a lively, playful boy with a passion for football and a love for Liverpool FC. We are endlessly grateful to Bristol Children’s Hospital for their life-changing care. We cannot imagine how we could ever repay the staff for what they have done.
I urge anyone considering epilepsy surgery at Bristol Children’s Hospital to trust the team. They are exceptional, and the results can exceed expectations. Charlie’s story is proof that with skilled care, compassion, and determination, children facing severe epilepsy can lead full, joyful lives.
Alfie – A Funny, Brave Little Boy Whose Light Shone Bright.98b
Alfie was a happy, lively, and incredibly funny little boy. Anyone who met him would remember his mischievous smile and his uncanny ability to make people laugh, even on the gloomiest of days. To his family, Alfie was more than just a source of joy—he was a bundle of energy, warmth, and laughter that could brighten any room. He loved playing with his brother Bobby, exploring the world around him, and constantly coming up with silly games that left everyone laughing. Life with Alfie was never dull; he had a spark that could light up even the darkest days. But life, as it often does, took a cruel turn that no one could have imagined.
A few weeks before being admitted to the hospital, Alfie occasionally complained of stomach aches. At first, his parents thought it was nothing serious—just one of those minor ailments that children often get. However, as the pain became more frequent and persistent, Alfie was taken to see the doctor. From there, he was referred to a larger hospital, and eventually came under the care of a consultant pediatric oncologist. It was then that the gravity of the situation became clear: Alfie was facing something far more serious than anyone could have expected.
Despite the pain and fear, Alfie remained true to himself. He was determined not to let his illness bring anyone else down. “Alfie was such a funny, cheeky little character,” said his father, Nathan. “Even in extreme pain, he would try to make people laugh. He wanted to see others smile, even if it drained the last of his energy.” Alfie’s humor and positivity became a lifeline for his family during the darkest days. He was a little beacon of light, reminding everyone that joy and laughter could coexist with struggle and pain.
Alfie’s younger brother, Bobby, was initially unsure what was happening. But once his parents explained the situation, he began to understand. Alfie no longer went to school after his diagnosis, yet he never allowed his illness to dim his spirit. He continued to be playful, affectionate, and, most of all, incredibly brave. He had a way of bringing comfort and joy even in the hospital room, telling jokes, making funny faces, and sharing his small victories with anyone who would listen.
On October 5, 2017, the family received the devastating diagnosis: Alfie had a desmoplastic small round cell tumor, a rare and aggressive form of sarcoma. The news shattered their world. They had hoped, prayed, and believed that the tumor could shrink enough for surgery, that Alfie could overcome this, and that life could return to some semblance of normal. But sadly, that hope was not to be fulfilled.
After a brief period at home, Alfie was sedated most of the time to manage his pain. During one moment when he woke, his parents were shocked by his words. “I am not the same person again. I want to die,” he cried, an astonishingly mature recognition of his suffering for an eight-year-old. Yet even in those darkest moments, Alfie declared to his parents, “I am not afraid.” His courage, wisdom, and resilience at such a young age left an indelible mark on everyone around him.
The timing of Alfie’s illness added an extra layer of heartbreak. His mother was pregnant with their daughter, and Alfie had been excited to become a big brother. He had dreamed of playing with her, teaching her, and looking after her—but he would not live to meet her. Alfie passed away in the early hours of October 27, 2017, with his parents at his side. Despite the unbearable grief, they later described how peaceful and pain-free he looked, a final quiet blessing after so much suffering.
Throughout his illness, Alfie displayed an extraordinary ability to focus on others despite his own pain. He comforted his family, played with his brother when he could, and even in sedation, his personality shone through. The bond between Alfie and their family dog, Diesel, was particularly touching. Diesel never left Alfie’s side during those final nights, offering a quiet, constant companionship that seemed to soothe Alfie in ways words never could.
Alfie’s story is one of extraordinary bravery, humor, and love. Though his life was heartbreakingly short, he lived it fully. He left behind not just memories, but a legacy of courage and joy that his family and everyone who knew him will carry forever. His mischievous laughter, cheeky smiles, and bright personality continue to inspire and remind his family of the incredible little boy he was.
Nathan shared his reflections on Alfie in December 2021, more than four years after his son’s passing. The pain of losing Alfie remained, but so did the precious memories of his laughter, his boundless energy, and the love he shared freely. Alfie taught those around him lessons that only a child facing such hardship could teach: how to be brave, how to care for others even while hurting, and how to live each moment as fully as possible.
Though Alfie’s journey was tragically short, it was also filled with light. He will always be remembered as the funny, brave little boy who, even in the face of unbearable pain, refused to let go of his spirit. His story reminds us that courage is not the absence of fear, but the determination to face each day with love, humor, and hope. Alfie’s life, though brief, continues to shine as a beacon of strength, joy, and inspiration for his family and for all who knew him.
In remembering Alfie, we honor not just his fight against illness, but the joy, laughter, and love he brought into the world. We remember the moments he made us laugh, the way he held his family close, and the courage he displayed every single day. He will forever remain a bright, shining presence in the hearts of those who loved him—a reminder that even the smallest among us can leave the greatest impact. Alfie may have left this world too soon, but the love and laughter he gave will never b
