This is a story about Emma, from Banbury, and her journey of courage, love and support. It is told by Gisela, Emma’s mum.
First visit to Helen & Douglas House
Our first experience with Helen & Douglas House came during their 2023 summer party. At the time, everything still felt surreal. Not long before this our daughter Emma had been diagnosed with a terminal brain tumour. We didn’t know what to expect from Helen & Douglas House children’s hospice at first, or even what it really meant. The word ‘hospice’ itself was frightening for us.
But that first visit to the summer party, where we also met some of the staff and other families, turned out to be a beautiful day. Emma had a wonderful time. There were magic shows, games, animals to pet and even an ice cream van. Emma’s little brother Eduardo, who was three at the time, also had a great day. It gave us a first glimpse of the warmth and joy the Helen & Douglas House could offer, even in the most difficult times.
Emma’s diagnosis
Before her diagnosis, Emma was a healthy, happy, and active six-year-old. She loved swimming, drama, and playing with her friends. We rarely had to take her to the doctor. But on Sunday 9th July she suddenly began making involuntary movements. We called 101 and were advised to take her to Horton Hospital in Banbury. Shortly afterwards a CT scan revealed a mass in her brain, and we were rushed to the John Radcliffe Hospital in Oxford. Her brain was under pressure, and she needed emergency surgery.
That was the moment everything changed. Emma was diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma) which is a rare and aggressive brain tumour that affects only around 40 children a year in the UK. It’s inoperable, untreatable, and has a devastating prognosis. We were told she might have nine months to a year to live. Just the day before, she had been at her swimming lesson, full of life. This drastic news was very choking for us.
Emma’s strength and determination
Despite everything, Emma amazed us with her strength. She had surgery on the Sunday after her diagnosis. Then was discharged by Thursday and was back at school on Friday. The very next day, she performed in her drama group’s summer show. That was Emma – determined, joyful, and full of life.
At the time of her diagnosis we were handed stacks of leaflets and information. It was too much to take in. Thankfully, a close friend stepped in to help us navigate the support systems and services available. We were still in denial, still trying to process the reality of DIPG.
Connecting with Helen & Douglas House
We cannot remember exactly when, but it was probably during our first hospital stay that we were introduced to the idea of Helen & Douglas House children’s hospice. The word ‘hospice’ itself was hard to hear, but our visit to the Helen & Douglas House summer party helped ease some of that fear. We didn’t end up using Helen & Douglas House for regular respite stays, but we did visit for family events like the summer party other seasonal events. We also got support with her symptom management.
Emma began radiotherapy at Churchill Hospital, which was an hour’s drive from our home in Banbury. The travel was exhausting – an hour there, five minutes of treatment, and then back home. It took its toll on Emma, but we managed this as a family.
We got further support from the hospice, with Harry the physiotherapist, who was helping Emma with exercises when she started to struggle with movement. We also had some visits at home from their outreach nurse to help with her medications and offer support for her care. Emma’s condition progressed quickly, and she passed away within nine months of her diagnosis.
Emma’s bubbly happy spirit
Despite her brain tumour, Emma remained her bubbly, happy self for as long as she could. We were told she would lose her speech and mobility, and whilst those changes did come, she handled them with incredible grace.
In January 2024, the hospital told us there wasn’t anything else that they could do for Emma. We decided as a family to do a clinical trial – onc201, in the United States. We flew out there later that month (January). During our time in the USA, Emma got really poorly and later ended up in the ICU. This was in late March – she was admitted on the Monday afternoon, and passed away on the Saturday night, aged 7 years (on 23rd March, 2024) and surrounded by her family. It was a very difficult time for us, but we had wanted to try and do everything we could for our daughter.
“By going to the US, we were expecting our miracle. But it didn’t go to plan and Emma grew her wings. On reflection I guess we were all in denial. Throughout her treatment and leading up to this trip we were in constant talks with Helen & Douglas House for symptom management.”
Later, we received a large bill for her care. It was over $120,000, and we didn’t have that sort of money. We started raising funds to pay for it, but in the December after her death, they reviewed her case and cleared the bill. This was a huge relief for us, but we had already raised funds. We decided that with the money we would do something good in her memory. As she had the rare DIPG we chose to donate the majority of the funds to a charity called Abby’s Army – which is dedicated to the research of DIPG tumours specifically. We have also decided to donate to Helen & Douglas House for the support and care they gave us.
Bereavement support
After Emma passed away in March, I received bereavement support from the Helen & Douglas House. My husband and I were grieving very differently – he’s quiet and reserved, while I tend to talk things through.
Later on we were referred to the ‘Forget Me Not’ parents group which has become the most amazing support for us both. It gave us a space to connect with other parents who truly understand what we’ve been through. For my husband especially, it was a turning point. He found people he could relate to, and we’ve formed lasting friendships. Even after the sessions ended, we continue to meet up on a regular basis.
A lasting impact
As a family, we didn’t use many of the Helen & Douglas House’s in-house medical services, but the emotional and community support has been invaluable. Helen & Douglas House became a place not just of sadness, but of connection, understanding, and even joy. Emma’s memory lives on in every story we share, every laugh we have with the friends we’ve made, and every moment we remember her strength.
Bubble Rush 2025
To mark Emma’s birthday which was on 5th September, Gisela and the family took part in the Helen & Douglas House Bubble Rush event on 14th September. They raised an incredible £5,000 which will help support more children like Emma.
