Ernest Evwaraye is the Family Wellbeing Service Deputy Service Manager for Merton Council as well as Co-Chair of the Race Equality Network (REN). As part of the new ‘REN Spotlights’ series, Ernest sat down with Alison Cramp, Teaching and Learning Adviser for Equalities at Merton Council where she shared her moving story of her beloved son, Dylan-James, who passed away from childhood cancer in 2018.
Dylan-James loved visiting Polka to have some time away from his treatments at the Royal Marsden and St George’s Hospitals. During Polka’s redevelopment project, a train booth in our café was dedicated to him and the happy times he spent in our venue.
Alison continues to be heavily involved with Polka, as part of both the Development Working Group and as a Marketing Ambassador offering valuable insights and advice.
In honour of Dylan-James’ story being shared again on Channel 4 as part of Stand Up To Cancer, we wanted to share this poignant interview to celebrate his touching legacy.
Tune into Channel 4 on Wednesday 25 October at 7.55pm to hear Dylan-James’ story.
Read the interview below:
EE: What is your favourite memory of your son Dylan-James that captures his spirit and personality best?
AC: Dylan-James loved ice cream! He was kind, brave, sweet natured, with a lovely sense of humour, he was always smiling and giggling. DJ was very playful and truly beautiful inside and out. DJ loved toy cars and singing & dancing, so I often thought he would be the next Lewis Hamilton or performing in Hamilton the musical. His favourite superhero was ‘Catboy’ and my favourite memory of DJ is him telling everyone he met that his name wasn’t really Dylan-James it was ‘Catboy’! this was from family to friends, neighbours, strangers – even the Royal Marsden Hospital Receptionist had to start signing him in as ‘Catboy’ He defined the word Superhero and he will always be my favourite.
EE: Do you have a favourite item, photo, or place that reminds you of DJ? What does it mean to you?
AC: The week before we lost Dylan-James, the Hospice Nurses at Shooting Star Children Hospice took prints of his hand, foot, and finger. This was made into jewellery, and it is the bracelet I wear every day, it is my favourite item. SU2C gifted me a locket with my favourite photo of him – still smiling after chemotherapy wearing a jumper that says, ‘True Hero’. My favourite place is his Tree House in our garden, and I have precious memories of him climbing up and down the stairs laughing and playing in there.
EE: DJ’s story was featured on Channel 4 programme ‘Stand Up 2 Cancer’, last year. How did your family’s ethnic background inform your decision to share DJ’s cancer journey publicly? Why was it important to showcase diverse perspectives?
AC: Channel 4 SU2C had heard of Dylan-James and approached us. It was extremely important to us to show our representation as an ethnically diverse family. Images of children fighting cancer have often not looked like Dylan-James. We wanted to demonstrate that cancer doesn’t discriminate, it does not care what colour you are or what your protected characteristics are. Cancer has a devastating impact on the lives of children and young people from ALL backgrounds.
EE: The Standup2Cancer film showed your incredible dedication as DJ’s health declined. What gave you strength to be so present during the hardest times?
AC: Dylan-James was always positive, uplifting, and inspiring – despite going through the most gruelling treatment regime of Chemotherapy, Radiotherapy, major surgeries, injections, endless medication, and countless blood transfusions. Seeing DJ and the other children on the oncology ward – I witnessed resilience in its most innocent form. That changes you and has changed me and my perspective on life forever. I drew my strength from how strong he was. DJ and those children taught me strength in the hardest times.
EE: DJ who was a Merton child, now has local tributes such as, the memorial tree planted at the then Lavender Nursery and the ‘Dylan-James Memorial Hall’ at the new Merton Medical Education School, which the Mayor opened in his memory last year. What does it mean to have these tributes in the community?
AC: The Star Magnolia Blossom tree was planted from the kind donations from Merton Lavender Nursery community, it is placed where DJ spent his happiest times playing in the outdoor area. I cannot think of a more fitting place than the Merton Medical Education School called Lavender Campus for his memorial hall in his name. The students who attend there are too unwell to attend their home school due to medical/mental health needs. Dylan-James would really approve of this location.
DJ loved visiting the Polka Childrens Theatre in Wimbledon before his diagnosis, and during his oncology treatment. We funded an Ice Cream booth shaped as train carriage in their building redevelopment and Merton families visiting the Polka can enjoy an ice cream in the booth while reading his memorial plaque. I was honoured to be asked to become an Ambassador for the Polka Theatre so I often revisit as an ambassador and I remember him over an ice cream in the booth.
It is so special to have these tributes in the community. I hope they can help others in many ways and make us all reflect. They are lovely ways to remember DJ and acknowledge him and his bravery.
EE: 2.9 million people tuned in to watch DJ’s story when it was aired on C4 last year. Your family has received responses from celebrities and strangers who have been truly moved by his story. What responses have been most meaningful to you?
AC: WOW Yes, 1 in 5 people in the UK watched Dylan-James’ story which is incredible. It has been an honour to share him, the response, and donations as a result towards Cancer Research has been phenomenal. So many people have been touched and moved by his story that this led to it being shared on Celebrity Gogglebox, The Celebrity Great British Bake off, Celebrity Hunted and campaigning with the Daily Mail to fight Childhood Cancer. The most meaningful part of sharing his story has been to raise awareness, gain funding as a response for research, so we can find a cure to end this evil disease.
EE: C4 have confirmed that they will be broadcasting DJ’s story again on 25 October 2023 in the ‘4thought’ primetime slot, just before C4 news. The Royal Marsden have also asked to re-share DJ’s story this Christmas at their 20th ‘Celebrate A Life’ service. What do you hope viewers and attendees will take away?
AC: Yes, Channel 4 will be re sharing Dylan-James’ story at 7:55pm which is amazing. I’m so proud that the kind donations DJ generates, every pound helps fund life saving research. As always, I hope his story raises awareness of childhood cancer and encourages prevention, detection, and treatment. With viewers support we really can save lives. I also hope what people will take away is to hold their children more tightly after seeing his story – as I’d do anything to hold DJ again.
EE: What charities or organizations did you work with during DJ’s cancer journey? How did they help support your family?
We were supported by St Georges Hospital, The Royal Marsden Hospital, Merton Community Nurses, Young Lives vs Cancer and Shooting Star Childrens Hospice. Both hospitals did everything they could to give Dylan-James the best medical care and oncology treatment options possible. DJ left an impression on all the NHS medical professionals involved on his journey and many attended his funeral. Young Lives Vs Cancer (which is like McMillian but for children and young people) supported us as a whole family with practical and emotional support. Helping Dylan-James make wishes and giving us strength whatever cancer threw at DJ. Shooting Star Childrens hospice helped us to make every moment count and provided the best compassionate end of life care when we faced the unimaginable and unthinkable.
EE: How can people help support and further DJ’s legacy through cancer advocacy or research funding?
AC: People can help by educating themselves that cancers in children and young people are different from adult cancers. Around 1,600 children under the age of 15 are diagnosed with cancer in the UK every year. Around half of these cases are in children aged 0-4 years old. Under the microscope children’s cancers look different to adults. They respond differently to treatment, so they need to be treated in different ways. We need funding to research new Childhood Cancer treatments. People can help by kindly simply buying and wearing a Childhood Cancer Awareness Gold ribbon. Or If you are able, please donate here: https://funds.younglivesvscancer.org.uk/Dylan-JamesFund
We owe it to brave children like Dylan-James to do everything we can to stand up to cancer and prevent further tragedies.
EE: What are your dreams for the future impact of DJ’s legacy?
AC: ‘Team Dylan-James’ continues to fund raise for childhood cancer through everything from climbing Snowdonia, London marathons, National and local news articles, non-uniform days in schools, school discos, cake sales and bucket collecting!
As part of DJs legacy, I sit on many Medical Steering boards and Advisory Groups for oncology and palliative children. One board is with medical consultants for the children’s hospices across the southeast of England, advocating for the best possible palliative and end of life care for children. I am very proud to say I have helped the Medical professionals re-design their Advance Care Plan for end-of-Life children across the UK. I sit on the Royal Marsden Steering group looking at research and treatment plans. I coordinate with St Georges Hospital the yearly Remembrance service for children known to and sadly lost at St Georges Hospital.
I am now a Trustee for the only UK’s bereaved Parents Charity TCF. The charity supports parents and families who have lost a child to any cause at any age. I have shaped and published resources with the charity such as ‘Losing a child aged 2-10 years old’ and ‘what friends and family need to know when you lose a child’. These booklets are in memory of Dylan-James.
I hope the impact of DJ’s legacy helps create a better future for children and young people with cancer. That the research people fund in his memory will help us see 3 in 4 people in the UK survive their cancer by 2034.
My dream is that when I finally have him in my arms again, he says “mummy we did it! we helped find a cure”.