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Meet Ellis

Ellis’ Story – Told by mum Rachel:

I am mum to Freddie, 11, and twins Ellis and Ava, aged two.

When Ellis was two his eye swelled shut. It looked like he had 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 to Manchester Royal Infirmary.

Ellis was diagnosed in August 2024 with Langerhans cell histiocytosis (LCH), a rare condition of the white blood cells which can make him very tired and unwell and began receiving chemotherapy as treatment in September. Ellis’ diagnosis meant he could not visit busy places, go to nursery, or spend time with other children his age, as he is at high risk of infection.

Our family life turned upside down

Since the diagnosis, I live a completely different life. Life changed drastically for all of us.

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 as we must ensure we are back in time to give Ellis his medication or to go to appointments.

The treatment and steroids also have 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 also live with a constant fear of bringing infections into the family home.

I feel like I have 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 look after Ava while I’m in hospital with Ellis. He has used up all his annual leave during our emergency hospital visits. Sometimes, friends and family have had to turn up at 2am to pick Ava up.

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

Family Support Worker Gina from the Greater Manchester Care team began supporting us shortly after Ellis was diagnosed. Gina is really friendly. She has a calming voice and took the time to sit and listen to me.

Recently Ellis developed a temperature and we were admitted to Manchester Royal hospital at night. We got home at 6am and within an hour we got a call as 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.

Gina was there for that appointment and that meant the world to me. I had no family with me while everything turned very serious very quickly.

Gina stayed with me until I was settled in the ward, which she knew I hated, because she wanted to make sure I was OK. 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

When Gina asked how she could help, I told her about Freddie. 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 is hard. There has been a lot 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 supported by Rainbow Trust. These days are just for Freddie and Gina is his cool friend.

Thanks to Gina, Freddie 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

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.

When Ellis was diagnosed, it was a huge emotional hit. The only other cancer I had 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.

But her support goes far beyond that.

I am an overthinker and Gina helps ground me and work through everything. She is like the family member I did not have.

I have always had a village of helpers but Gina’s support has made a big difference. She listens and talks to me about everything. She gives me some routine in my life, and I know the children are safe with her.

On occasion, neighbours would take Freddie to school and family members would transport me and Ellis to important treatment appointments.

Ellis rang the bell on the 15th of April 2025 to mark the end of his treatment.

Life is returning to “normal”, but what does that even mean anymore? I still have so many questions.

Family Support Worker Gina reassured me: “Just because the treatment has stopped, it doesn’t mean Rainbow Trust’s support will too.”

Gina has made a big difference. She listens and talks to me about everything. She gives me some routine in my life, and I know the children are safe with her.

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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Continued support for a family for as long as they need us

Hearing your child has a life-threatening illness is the hardest thing any parent can experience - but they don’t have to go through it alone.

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