A young girl and boy who are siblings embrace each other on holiday.

“Robyn was diagnosed with a DNET brain tumour four years ago. The type of tumour she has is linked to chronic, medically intractable focal epilepsy, meaning Robyn experiences daily seizures that cause involuntary laughing and smiling, and often make her suddenly slump. Although the tumour is low-grade and slow growing, her specialists carefully monitored it, before deciding, in October last year, that the time was right to begin chemotherapy in the hope of stopping any further growth. Robyn is being cared for by the teams at The Royal Marsden and St Peter’s Hospital and is due to complete her treatment in May 2027.

The children were both very young when Robyn was diagnosed, so her illness quickly became part of everyday life for them. As they have grown older, Ellis has become much more aware of what Robyn is going through and has started asking more questions.

Sweet, kind-hearted, with a deeply sensitive nature are a few of the ways I would describe Ellis. He loves musical theatre and reading and is incredibly bright. Like many siblings, Ellis and Robyn argue like cat and dog and are constantly wrestling and play fighting, but beneath it all Ellis has an enormous amount of love for his sister and never hesitates to show it.

Last year, Ellis was diagnosed with ADHD and autism, bringing a new set of challenges that we are learning to navigate together as a family.

Ellis was awarded a Community Cup in recognition of his charity work and the different ways he has helped raise awareness of brain tumours. From completing a 10k walk to supporting a family friend’s fundraising efforts for brain cancer research, he has shown so much compassion and determination. Ellis has also bravely spoken about Robyn’s illness during a school assembly and has shared his experiences with other parents and children in the school community.

Ellis has become incredibly attuned to Robyn’s condition, often acting as an extra pair of eyes and noticing the subtle signs that she may be about to have a seizure, or ‘a wobble’, as we have come to call them in our house.

Robyn’s illness has had an enormous impact on Ellis, and he has often told me and my husband that he feels left out at times, particularly when we leave him with family or a childminder while we take Robyn to hospital appointments.

At times, Ellis has heartbreakingly said that he wished he had a brain tumour too, because Robyn would receive cards, gifts and messages from friends and family. More recently, he has also started to feel frustrated by Robyn’s ‘wobbles’ especially when they interrupt moments, he is looking forward to, like starting a game or playing on the Switch together. It has been a difficult balance for him – loving his sister deeply while also navigating the complex emotions that come with living alongside her illness.

Momentum has arranged music therapy sessions for Ellis which he has absolutely loved. During his second session, he wrote a song for Robyn, which was incredibly special for all of us. Through the therapy, he is being supported to better understand how Robyn feels, while also helping him process and express his own emotions. Momentum has also referred Ellis to Young Carers, giving him access to support and experiences that are entirely his own.

Routine is important for Ellis, and he thrives on knowing what to expect each day. He loves his extra-curricular clubs and keeping busy. Cricket is a particular passion of his, and his dad runs the local boys’ team, which has given them a shared hobby and valuable one-to-one time together. It also gives Ellis a chance to switch off and simply enjoy being a child.

At home, he loves bouncing on the trampoline in the garden and relaxing in front of the TV – although we do try to keep screen time balanced. Having these familiar routines and activities has become such an important source of comfort and stability for him.

Ellis’s love of reading has helped him to make sense of Robyn’s condition – he often reads books and stories for children about cancer and other conditions which we have picked up at the hospital for him.

Looking to the future, what would really benefit Ellis is the opportunity to connect with other siblings who are going through similar experiences. He is such a chatty, friendly boy and he often tells me that he wants to meet someone who understands what his life is like, and it would really help him to see that it is okay to feel a range of emotions. Having that visibility of others in a similar situation would be incredibly powerful, helping to normalise his experiences and reassure him that he is not alone.”

Momentum supports siblings through one-to-one sessions with Family Support Workers, sibling meet-ups, tailored therapies and counselling, and bereavement support when a child sadly dies. We’re raising £15,000 to expand this support so more children like Ellis can get help when they need it most.

Find out more about how you can help make a difference here

Story taken May 2026