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Emma's Story

Emma as a fairy princess

Born on 5th September 2016, in Banbury, Oxfordshire, England, Emma brought immense joy and love to all who knew her. Her vibrant spirit illuminated every room she entered, filling our lives with laughter, love, and endless warmth.  


A vivacious second-grader, she adored school and cherished every moment spent with her classmates. Her days were filled with an array of passions and interests, from dancing and gymnastics to swimming and drama. Emma loved baking cakes and cookies, which always put a smile on her family's faces. She couldn't resist eating tasty snacks like her favourite tequeños and her go-to Friday night pepperoni pizza.


With a heart as pure as her love for sparkles, rainbows, and unicorns, Emma's presence radiated joy and happiness wherever she went.


On the 9th of July 2023, our beloved Emma was taken to A&E due to feeling unwell, we could have never imagined that our world would soon be turned upside down. Emma was diagnosed with diffuse intrinsic pontine glioma (DIPG), a rare and aggressive brain tumour, and was given only a few months to live.


The following days, we were spent in shock as our bubbly, healthy child underwent emergency surgery to insert a shunt in her brain to treat hydrocephalus caused by the tumour.

Emma going for a MRI

On 31st August, Emma began a six-week radiotherapy treatment. Despite daily one-hour journeys to Oxford Hospital, she showed immense bravery and resilience. We were in and out of the hospital for tests and three more surgeries, yet Emma always had a smile on her face, eager to enjoy life with her family and friends. 


Her determination to return to school was a testament to her unwavering enthusiasm for living and learning. Emma never lost her happy spirit and taught everyone around her the true meaning of courage. 


For the rest of the year we tried to fill the days with days out creating memories. We celebrated her 7th birthday with an L.O.L party as she wanted, we went trick and treating for Halloween and we had a wonderful Christmas time with all the family around. Despite occasional headaches and the need for steroids to manage them, Emma stayed strong, only showing signs of tiredness now and then. 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.  


In January 2024, Emma required another shunt revision and after her surgery doctors advised that the NHS could no longer offer further treatment due to the tumour’s progression. Even with the lack of financial support, we then made the extremely difficult decision to travel to the USA for a clinical trial with ONC201, seeking any chance to extend Emma's life.


Against the daunting odds, she faced her battle with unwavering courage and resilience, inspiring everyone who knew her. 
Emma meeting Daisy duck

At the beginning of March, we had a wonderful week at Disney World in Florida, thanks to Make-A-Wish Foundation in Iowa. By this time Emma was unable to walk long distances as she was so much weaker.  


However, she was so excited that not even her tiredness or pain could stop her from seeing her favourite characters. Take a photo with them and even ask for an autograph. She had a special fondness for Disney princesses, especially Ariel, Elsa, and Anna. Therefore, she will forever be remembered as our eternal princess. 


Back in Iowa, after our wonderful holiday, Emma grew very tired and began complaining of back pain. We rushed her to A&E, and that same night, she was admitted to the ICU for several days. We were devastated to learn that her cancer had spread to her spine, something not typically characteristic of DIPG. 



On 23rd March 2024, surrounded of family, our precious Emma, lost her battle in the US at Blank Children's Hospital in Des Moines, Iowa. Emma's legacy of love continues to unite and inspire. As our family navigates this challenging journey, we strive to honour her by living life to the fullest and always smiling, just as Emma did. 


Forever in our hearts, Emma's legacy of love and laughter will continue to brighten our lives. 

With love and remembrance,                                                    


Emma's Family 💖👨‍👩‍👧‍👦



 

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Abbie's Army are committed to funding critical research to fight DIPG, the deadliest childhood brain cancer. Your donation, no matter the amount, helps give hope to families and brings us closer to a cure. Please consider donating today so that no other family has to face this unimaginable loss.





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