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Meet Ellis

Ellis’ Story – Told by mum Rachel:

I first realised something was not right when Ellis had a swollen eye – his eyelid was closed, and he could not see. It looked like he'd been in a fight. I took him to hospital, and the doctors believed it was a cyst, so they gave me eye drops. After three months, they eventually did a CT scan and referred us straight to Manchester Royal Infirmary.

At two –years – old Ellis was diagnosed with a rare condition called Langerhans Cell Histiocytosis (LCH), which can make him very tired and unwell, and began receiving chemotherapy as treatment in September 2024. Ellis’ diagnosis means he cannot visit busy places, go to nursery, or spend time with other children his age, as he’s at high risk of infection.

Ellis’ condition began to affect his sight; he was doing strange things with his eyes and began walking into the floor and walls, he's been sick quite a lot and has had quite a few infections due to getting a central line fitted in his chest.

Before Ellis was diagnosed, I thought chemotherapy was only used to treat cancer. But I've since learned it is used for several conditions. There has been a longstanding debate as to whether LCH is cancer, but my family has always seen Ellis’ condition as a cancer because of the treatment he receives.

Family Life Turned Upside Down

For me, it's like a big bomb’s gone off, and I live in a completely different life now.

After Ellis was diagnosed, life changed drastically. My whole routine changed. The treatment and steroids have completely changed Ellis’ personality and I feel really guilty for my other twin, Ava. I have to tell her that she can’t play with Ellis the way she wants to as he is too sick.

I live with ‘mummy guilt’ all the time – Ellis’ diagnosis has torn our lives apart, splitting up all three children because we spend so much time in hospital or at appointments.

There has been a huge impact on me and my son Freddie being able to do normal activities together or trips out as we must ensure we are back in time to give Ellis his medication or to make appointments.

I also live with a constant fear of bringing infections into the family home.

I feel like I've become a scientist, mixing medicines. I feel like I'm a doctor, I'm a carer, I'm a nurse, and a mum. I am separated from my other children all the time with Ellis in hospital.

I also feel guilty because Ellis’ diagnosis is affecting my partner Jake’s job. He is a baker and works very early shifts. Jake is on his last warning at work because he often has to ring in and say, ‘I’ve got to look after the other twin’ while I’m in hospital with Ellis. He’s used up all his annual leave during our emergency hospital visits. Friends and family have had to turn up at two am to pick Ava up.

My life is juggling Ellis’ treatment with work, childcare and taking my eldest son Freddie to and from school.

Rainbow Trust’s Support

Family Support Worker Gina from Rainbow Trust’s Greater Manchester Care team began supporting us shortly after Ellis was diagnosed. We first talked over the phone, and I found Gina really friendly. She has a calming voice and took the time to sit and listen to me.

Recently she was supposed to have a two-hour visit to spend time with the twins so I could get some me-time or catch up on housework. But everything flipped because Ellis developed a temperature. We were admitted to Manchester Royal hospital at night and didn’t get home until 6 am. Within an hour of arriving home, we got a call — Ellis’ infection was serious, and he had to go back in.

The doctors told us they were bringing forward his final chemotherapy session and that meant I would have to be separated from my other children for four days. The doctors just dropped bombs on life as I knew it; Gina was there for that appointment, and that meant the world to me. I had no family with me, and it turned very serious very quickly.

She stayed with me until I got comfortable on Ward 86 which she knew I hated - because she wanted to make sure I was okay. She always puts a plan in place and starts every visit by asking ‘what would you like me to do today?’

After Ellis’ final chemotherapy, it felt like the doctors handed his life back into my hands. Visiting the hospital was our new normal, and now Ellis' life is back in my control. I feel really anxious because we have one more meeting, then I won't see them for six weeks.

Sibling support for Freddie, Ellis’ Older Brother

When Gina asked how she could help, I told her about Freddie, my 11-year-old son. He doesn’t open up much and can get jealous because he was an only child for nine years. Now, with the focus on the twins, it's hard. There has been a lot of transition for him to get used to.

Gina takes him on special days out including to the park to play football and the cinema where he can meet other siblings from Rainbow Trust. These days are just for Freddie and Gina is his cool friend. He keeps saying to me, ‘Why don’t we go out anymore?’ But he doesn’t understand about Ellis’ immune system.

Thanks to Gina, he gets back some normality. She makes the day about him really taking him into consideration- and the twins love her too.

Practical and Emotional Support for Mum

Gina provides transport to hospital appointments, which is vital because I cannot drive, and Ellis isn’t allowed on public transport due to the risk of infection. She also takes me to psychology appointments and looks after the twins whilst I’m there. But her support goes far beyond that.

Gina helps ground me and work through everything as I am an overthinker. She is like the family member I didn’t have. I’ve had a real fight dealing with all these doctors. Rainbow Trust offers a non-medical side to all of this - and it means the world.

When Ellis was diagnosed, it was a huge emotional hit. The only other cancer I’d experienced was my dad dying when I was 14. Gina took me to psychology appointments so I could process my father’s death. I needed to tidy away my past in order to face Ellis’ diagnosis.

Gina has made a big difference she listens and talks to me about everything. She’ll always pick up the phone when I need somebody. She gives me some routine in my life, and I know the kids are safe with her.

I'm just going to live for now, I feel paranoid and scared, Ellis’ life and health has now been placed back in my hands. Visiting the hospital was our new normal. Now we’ve got to try and return to some form of normality, and I know Gina will help with that. I would go stir-crazy without Rainbow Trust.

The Bell and Beyond

At first, I didn’t want to ring the bell to mark the end of Ellis’ treatment. I thought it meant you were cancer-free - and we are not sure what the future holds for Ellis. But my family reminded me of how far he has come since his diagnosis. We decided we will ring it - not to say it’s over, but to acknowledge his strength.

I have always had a village of helpers. Neighbours would take Freddie to school and family members would transport me and Ellis to important treatment appointments.

Family Support Worker Gina has driven us to emergency appointments even when there was not a planned visit that day and has given me the confidence to leave all three children alone with her, giving my family a sense of security and safeness.

Ellis rang the bell on the 15th of April 2025.

I am anxious that this village of helpers is not going to be there since Ellis has rang the bell. I feel paranoid and scared now that the hospital appointments have stopped. Life is returning to “normal”, but what does that even mean anymore? I still have so many questions.

But Family Support Worker Gina reassured me: “Just because the treatment has stopped, it doesn’t mean Rainbow Trust’s support will too.” Gina’s continuity is so helpful. She is our constant despite turmoil and change. Like a friend.

There are so many families like Ellis', that may be feeling so helplessly alone and desperate, who need this specialist support. Please donate today to help us support more families like Ellis'.

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Ellis' Story