Sophia's Story

Sophia, our firstborn of three children, was a force of nature, brimming with life and energy. Anyone who met her was instantly captivated, as she had a gift for drawing people in with her meaningful and exciting conversations.

She couldn’t stand to see anyone left out and always went out of her way to include everyone. Her favourite place in the whole world was at her art table, where she would lose herself for hours, crafting paper handbags or making sparkly crowns, her face lit with pure joy.

In the summer of 2023, Sophia was four years old, soon to turn five. It was a summer filled with anticipation and excitement as we planned her upcoming birthday celebration. But it was also when we first noticed something—just a small change that, at the time, seemed insignificant. Sophia’s right eye began to blink differently than the left, but after a routine eye test came back normal, we brushed it off, attributing it to the excitement and late nights of summer. She also started having trouble falling asleep, which was unlike her, but again, we dismissed it, thinking it was just the hot nights or her excitement for her birthday.

September brought a new chapter in Sophia’s life—her first day at ‘big school.’ She was so excited, her face glowing with happiness as she walked into reception class with her new uniform. She loved school, and we quickly settled into a busy new routine. 

Then, in mid-November, during a much-anticipated family trip to Lapland which included, Sophia, Sophia’s dad Martin, Sophia’s younger sister Amelia, and myself who was at the time, 37 weeks pregnant, I noticed something that sent a chill through me. Sophia, who had been bursting with excitement for this trip, suddenly seemed unsteady on her feet, wobbling as she walked. It was so subtle that I told myself it was nothing, but that nagging worry was hard to shake.

A week later, on a Saturday morning in late November, our world changed forever.

Sophia woke up complaining of a headache. As she got out of bed, she stumbled and fell, struggling to find her balance. Her speech, usually so clear and full of enthusiasm, became slurred. It was as if a switch had been flipped overnight, transforming our joyful, vibrant little girl into someone I barely recognised. Fear set in.

We phoned the GP who then sent us to A&E, clinging to the hope that it was something minor, something that could be easily fixed. But as we described her symptoms to the nurse, I could see the urgency in her eyes. We were taken into a cubicle, and within moments, the atmosphere became thick with tension. After a flurry of tests, including a CT scan, I caught sight of three doctors huddled together outside our cubicle, their faces strained as they examined the CT scan.

When they admitted Sophia, my heart sank. They said there was a mass on her brain, words that felt like a punch to the gut. But even then, I held onto hope, telling myself, "They can fix this. They have to."

Sophia underwent an MRI, and we met with the oncologist two days later. The walk to that meeting felt like walking towards doom. I clung to the belief that it could be fixed, that whatever it was, we had caught it in time. But when the oncologist showed us the scans, my world crumbled. Sophia had a DIPG tumour, the deadliest brain tumour known, in the most delicate part of her brain—the pons. The words "incurable and inoperable" echoed in my mind, turning my world dark. I screamed, "No!" as the oncologist explained that Sophia had only months to live. Our beautiful, bright girl was dying, and there was nothing we could do.

and with a new baby due in just 10 days, the timing was cruel beyond measure. 

In the days that followed, we were numb with shock. We clung to each other, to Sophia, and to any sliver of hope. Despite our fear, we agreed to a biopsy, in the hope of getting Sophia into a clinical trial.  Desperate to try anything that might give her a chance. But the procedure went horribly wrong, and she was rushed to ICU. Sophia suffered a catastrophic brain bleed during the biopsy. The surgeon told us to gather our family and friends to say goodbye. They were certain she wouldn’t wake up, and if by some miracle she did, she would be paralyzed.

In mid-December, Sophia opened her eyes briefly, giving us a glimmer of hope. But it quickly became clear that she was not the same. our worst fears were realized. She was completely paralyzed, trapped in her own body, unable to move, speak, or even hold her head up. Our vibrant, energetic daughter, who had walked into the theatre by herself, full of life and joy, was now a shadow of herself, utterly helpless. We were devastated, our hearts shattered into a million pieces. We were crushed, mourning the loss of our vibrant girl while she was still here.

The days that followed were filled with unbearable pain. Sophia was still in the ICU when our son, Alex, was born in the same hospital. The joy of his arrival was overshadowed by the sorrow of seeing our daughter in such a state. Sophia had so looked forward to meeting her baby brother, but now that moment was slipping away.

Christmas came, and we brought Sophia home for four precious hours. She was in a wheelchair, and we cried as we tried to make the most of what we knew would be our last Christmas together. Sophia couldn’t hold her gifts or enjoy the treats she had once loved. The joy of the season was eclipsed by our overwhelming grief. We poured all our love into those few hours, knowing they were all we had left.

By January, Sophia was home permanently, under palliative care. We were trained to care for her, to administer her medication, and feed her through a NG tube. We had daily visits from the nurses over at sunshine house as well as visits from the team at the Royal Marsden who supported us with Sophia’s care. We tried to cherish the time we had left, but it was clear Sophia was slipping away from us. Her eyes, which we had willed to open after the biopsy, began to close again as she grew sleepier each day.

In mid-January, Sophia suffered a severe seizure and was rushed back to the ICU. An MRI confirmed our worst fears—the tumour had grown. The doctors told us to prepare for the worst. Faced with the unbearable choice of where Sophia would take her final breaths, we brought her home. knowing that it was only a matter of time. On the day she arrived home, Sophia was extubated and, defying the odds, continued to breathe on her own for four weeks and five days. At just 5 years old, Sophia passed away in February 2024, in the home she loved so much. Our hearts are forever broken.

In March 2024, we held a beautiful celebration of life for Sophia, followed by a private burial.

In just three short months, DIPG had taken our sweet, vibrant daughter from us. We are left with the rage and heartbreak of losing our healthy, bright girl to this merciless disease. Sophia spent her last weeks paralyzed, trapped in her body, terrified and unable to communicate. The pain of seeing her tears, knowing I could do nothing to comfort her, is something I will carry with me forever.

We are now determined to fight for better, safer treatments for children diagnosed with DIPG. We will continue to raise awareness and advocate for research, hoping that one day, no other family will have to endure the hell we have lived through.

In May 2024, Sophia’s school came together to organise a ‘rainbow walk’ in her memory, raising £1,664.82 for Abbie’s Army. It was a beautiful tribute to our daughter’s bright and colourful spirit.

It is our wish that we set up a children’s fund in Sophia’s name to help Abbie’s army to continue to raise awareness of DIPG, to honour Sophia’s memory, and to help others who face this devastating diagnosis. 

Sophia’s light will never dim; it will shine through every life we touch in her name.

All of our love, Mum, Dad, Amelia and Alex 

X x x x

Rest in perfect peace.

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Join the Fight for a Cure—Donate Now

Abbie’s Army is on a mission to defeat DIPG, the deadliest childhood brain cancer. By joining us in this fight, your donation powers the essential research that brings us closer to a cure. Together, we can offer hope to families and prevent others from enduring the same loss. Stand with us—donate today.