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.