Emma’s Story: A Legacy of Love and Courage

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Who Emma Was

Born on September 5, 2016, in Banbury, Oxfordshire, England, Emma brought immeasurable joy and love into the world. Her vibrant spirit lit up every room, and her laughter was contagious.

Emma was the best big sister, always looking out for her little brother with gentle kindness and unconditional love. She adored him, showering him with hugs and laughter. Her warmth extended to her cousins and friends, always eager to include everyone, offer comfort, and share her joy. Whether playing, helping, or simply being present, Emma’s caring spirit made those around her feel safe and truly loved.

Emma loved school and cherished every moment with her classmates. Her days were filled with passion for different activities—dancing, gymnastics, swimming, drama, and baking sweet treats. Friday nights were “Pizza Night”, where her favourite pepperoni pizza never failed to bring smiles.

With a heart as pure as her love for sparkles, rainbows, and unicorns, Emma lived with joy, compassion, and endless creativity.

A Journey of Strength

On July 9, 2023, after feeling unwell, Emma was taken to A&E. We could never have imagined how drastically our world would soon change. The diagnosis was something no family should ever have to hear: Diffuse Intrinsic Pontine Glioma (DIPG)—a rare and aggressive brain tumour—giving her just months to live.

The next day, our bubbly, healthy 6 years old girl underwent emergency brain surgery to insert a shunt, treating hydrocephalus caused by the tumour. Despite the shock and fear, Emma faced each challenge with unwavering courage. She never stopped amazing us. Just five days later, she performed in her drama group’s summer show, playing one of the “Three Little Piggies.”

On August 31, she began six weeks of radiotherapy —30 sessions, Monday to Friday. Despite daily one-hour journeys to Oxford Hospital, she remained brave and resilient, facing each session fully awake, collecting her “Beads of Courage” and stickers with pride.

It was heartbreaking to see her hold onto hope that by the end of her treatment, she would feel better, return to her normal activities, and rejoin her friends at school for Year 2. However, we understood the reality for children with DIPG, and knew that her wishes might not come true.

Making Memories

Despite three further surgeries and ongoing treatment, Emma’s spirit never dimmed. Emma never stopped smiling—eager to enjoy life with family and friends.

She danced, played, and smiled her way through her battle, teaching everyone around her the true meaning of bravery and determination.

In the months that followed, we made precious memories—

🎉 A magical 7th L.O.L surprises birthday party

🎃 Halloween trick-or-treating with her little brother and friends

🎄 A Christmas surrounded by love, with family coming together to celebrate

✨ A visit to Legoland full of fun

Despite occasional headaches and the need for steroids, Emma remained strong. Though the doctors noticed some weakness on the right side of her body, she continued to walk, visit soft play areas, and dance with her usual enthusiasm. We held onto hope, believing that a miracle would save our beautiful girl.

Fighting for Time

In January 2024, after another surgery, doctors confirmed our worst nightmare. The tumour was in progression and there were no treatment options left in the UK.

With no financial support, we made the difficult decision to travel to the USA to enrol her in a clinical trial using ONC201, seeking any chance to extend Emma's life. Against daunting odds, she continued to inspire everyone with her resilience and light.

Beginning of March, thanks to Make-A-Wish Iowa Emma visited Disney World in Florida. Though she was growing weaker, and unable to walk long distances nothing could dim her excitement. She met her favourite characters—Ariel, Elsa, and Anna—and asked for their autographs with pure joy.

She will forever be our Eternal Princess.

Saying Goodbye

Back in Iowa, Emma began experiencing back pain and tiredness.

We rushed her to A&E, where she was admitted to ICU. The devastating news followed—her cancer had spread to her spine, and time was slipping away.

On March 23, 2024, surrounded by family, our precious Emma peacefully grew her wings at Blank Children's Hospital in Des Moines, Iowa after a courageous 9 months battle.

She was just seven years old.

One Year Without Emma

A year has passed—a year of loss, change, and learning to live with grief that never truly fades.

But also—

💖 A year of love

🌈 A year of support

✨ A year of witnessing just how much Emma’s life meant to so many

The Power of Kindness

Last year, we launched a fundraiser to cover the $130k USA medical bill we faced when Emma became unwell abroad.

Overwhelming kindness followed—friends, family, and even strangers rallied to help. Donations, running, hiking, baking, shaving heads—all in support of Emma’s story.

At the end of 2024, we received news that Blank Children’s Hospital had cleared Emma’s medical bills. Because of you, heartbreak turned into something meaningful.

Thanks to your support, we have donated £47,000 to the CAR-T cell therapy trial for PDHGG and DMG patients at Great Ormond Street Hospital for Children, co-funded by Abbie’s Army.

This £1.48m study, known as GLIMPS, will expand access to 12 additional patients, targeting the IL-13RA2 antigen found in glioma cells.

But we need your help to continue supporting DIPG research and Abbie’s Army—the only UK charity dedicated to DIPG research and we have created this new fundraiser page.

Join Emma’s Rainbow Troop

💖 To fight DIPG

🌈 To keep Emma’s spirit alive

You can donate directly or organise an event – charity run, bake sale, raffle or any fundraiser that brings people together in Emma’s name. Every effort, big or small, helps fuel the fight against DIPG and bring hope to families affected by this devastating disease.

Even by simply sharing Emma’s story – spreading awareness and encouraging others to get involved – can make a difference. However you choose to support, you are part of her legacy, helping ensure no other family has to endure this heartbreaking journey and children diagnosed with DIPG can hold onto hope for a brighter future 💛✨

Emma Is Everywhere

We believe she is -

In every rainbow

In every act of kindness

In every moment of joy you choose to embrace

And if you ever see a rainbow—give our Emma a little wave.

She’s probably waving back.

With endless love and remembrance,

Emma’s Family 💖👨‍👩‍👧‍👦

#EmmasRainbowTroop

#DIPGangel

#ForeverSeven