“Everything crumbled” when the parents were told the news
13:14, 02 Jan 2026Updated 13:32, 02 Jan 2026
Capri was diagnosed with a rare and aggressive tumour just after her first birthday(Image: Elissa Hilsden / SWNS)
Capri Hilsden had just celebrated her first birthday when her parents were told she had a “rare and aggressive” condition. Elissa Hilsden, 30, sought medical advice after a friend noticed her daughter had an unusual head tilt in a photo.
The tilt was initially put down to a mere ear infection and cold-like symptoms, such as a virus, but after noticing a a problem with her daughter’s right eye, Elissa rushed back to the hospital and a CT scan was performed on Capri. The scan unveiled the one-year-old had an Embryonal Tumour with Multilayered Rosettes (ETMR), a rare and highly aggressive form of childhood brain cancer.
Following her diagnosis in November, Capri has undergone several surgeries to remove the tumour and remains in hospital with her mum Elissa, an engineering teacher, and dad Anthony, 35, an engineer.
Elissa, from Biggleswade, in Bedfordshire, told the Daily Star: “The week after Capri’s first birthday, she had cold-like symptoms, which I monitored and put down to her having recently started nursery. I did, however, try to get a doctor’s appointment through their online triage service and was told that it was likely viral and would pass.”
However, when a friend noticed Capri’s head positioning in photographs and footage Elissa started to feel anxious.
She added: “I received a text from my friend. They said: ‘I hope I don’t overstep here, I’m really sorry if I do… Have you asked anyone about her little head tilt?’ I noticed it on the weekend and then in the video of her on the swings and the video you just sent… I’m wondering if she has a poorly ear’.”
The worrying text spurred Elissa to examine photographs and footage from recent weeks and she realised her daughter did have a head tilt.
She said: “I felt so guilty for not having noticed it, but when you see her every day you don’t notice the subtle changes.”
A first her head tilt was put down to cold symptoms(Image: Elissa Hilsden / SWNS)
Capri was rushed to Bedford Hospital for emergency treatment. Elissa said: “They checked her over and they said that she had an ear infection, which was likely the cause of the head tilt. So we had a week of antibiotics.”
During that week, Elissa spotted another troubling alteration in one of her daughter’s eyes.
She said: “Occasionally, when she would look at me her right eye seemed vacant. It’s difficult to describe, but I just felt looking at it that she wasn’t really staring at me at all.”
Capri’s symptoms continued after a course of antibiotics so Elissa took her daughter back to hospital. She said: “I really just felt that something wasn’t right. I went back to the GP, told them everything about the head tilt and the vacancy of the eye which I’d been unable to capture in a photograph, and we were sent straight to Bedford hospital.”
A CT revealed she had a tumour and Capri was rushed by emergency ambulance to Addenbrooke’s Hospital, where she endured a 12-hour brain operation on November 18.
However, surgeons could only extract approximately 80% of the tumour and on November 22, doctors confirmed Capri’s ETMR, cautioning that, without additional removal of the tumour, the family might have as little as two months remaining with their daughter.
Capri with her mum Elissa and dad Anthony(Image: Elissa Hilsden / SWNS)
Capri then developed sepsis during her recovery and was urgently transferred to intensive care. Once stable she was transported via ambulance to Alder Hey where surgical teams successfully extracted additional portions of the tumour utilising an intra-operative MRI scanner, making chemotherapy a viable treatment option.
The little girl returned to Addenbrooke’s Hospital, where she underwent a stem cell harvest and additional surgery to install a shunt for relieving brain pressure. Her first of six intensive chemotherapy cycles commenced on December 20.
Elissa and Anthony have spent over a month sleeping on the ward alongside their daughter and providing care throughout her operations, sepsis and recovery period.
The parents set up a fundraising campaign shortly before Christmas, to help cover costs between Capri’s chemotherapy sessions while they stay at the hospital with their daughter.
Elissa said: “We honestly didn’t know how we could afford to be by her bedside through the six rounds of chemo that she needs.” And, despite Capri’s condition, her parents made every effort to ensure her hospital Christmas remained as memorable as possible.
The mum said: “We tried to make Christmas special, but it’s hard being in the hospital. We just kept it small and got Capri a couple of presents. Addenbrookes have pulled out all the stops, days of activities and nurses dressed up for the festivities.
“[They] helped Santa leave a secret stocking at the end of her bed and presents under the tree. Her favourite present has been a doctor’s kit given by oncologist Charlie.
“Of all the things she’s been through, Capri has always been afraid of a stethoscope. Charlie sat and played with Capri and her doctor’s kit until that fear has gone. Care at Addenbrookes goes beyond medicine.”
The pair have raised £34,000 so far towards their £50,000 goal. You can make a donation to the family on GoFundMe.