One-year-old Capri was taken to the doctor after a friend noticed something in photos – leading to a devastating diagnosis that saw ‘everything crumble’
A toddler’s slight head tilt was brushed off as an ear infection before the true cause was found. One-year-old Capri’s mum, Elissa Hilsden, 30, sought medical advice after a friend pointed out the unusual tilt in photos.
The little girl had just celebrated her first birthday when the health concern led Elissa to seek professional medical attention. Elissa alleges that doctors initially dismissed Capri’s head tilt and cold-like symptoms as a virus and an ear infection.
However, upon noticing a minor issue with her daughter’s right eye, Elissa rushed back to the hospital for a CT scan. The scan unveiled the ‘horrific’ reality of Capri’s condition: an Embryonal Tumour with Multilayered Rosettes (ETMR), a rare and highly aggressive form of childhood brain cancer.
Following her diagnosis in November, brave 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. The family, who spent Christmas at Addenbrooke’s Hospital in Cambridge, have initiated a fundraising campaign to help cover costs between Capri’s chemotherapy sessions.
Elissa, from Biggleswade, Bedfordshire, revealed that she first noticed something was amiss with her daughter’s health shortly after her first birthday in November.
She said: “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 expressed concern about the angle of Capri’s head in photographs and videos, Elissa’s worries resurfaced.
She continued: “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’.”
This troubling message led Elissa to look back through photographs and videos from recent weeks.
She recalled: “I realised that, yes, she did have this little head tilt. I felt so guilty for not having noticed it, but when you see her every day you don’t notice the subtle changes.”
Growing increasingly anxious, Capri’s parents rushed her to Bedford Hospital for urgent care, where medical staff initially thought they’d identified the reason behind her head tilt, according to Elissa.
She 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.”
Yet during that week, Elissa spotted another concerning development with one of her daughter’s eyes.
She continued: “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.”
As Capri’s symptoms continued following the antibiotics course, the family returned to the hospital.
Elissa explained: “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.”
Upon arrival at the hospital, Capri finally received a CT scan, which uncovered the devastating reality.
Elissa recalled: “They told us the horrific news that Capri had an extensive brain tumour. It was that moment that everything crumbled.”
Capri was urgently transferred by blue light to Addenbrooke’s Hospital, where she underwent a 12-hour brain operation on November 18. However, surgeons could only extract approximately 80 per cent of the tumour.
The tumour was dispatched for analysis 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. Compounding the tragedy, Capri developed sepsis during her recovery and required emergency intensive care treatment.
Following stabilisation, she was transported by ambulance to Alder Hey Children’s Hospital in Liverpool, where surgical teams successfully removed additional portions of the tumour utilising an intra-operative MRI scanner, making chemotherapy a viable treatment option. Capri subsequently returned to Addenbrooke’s Hospital, where she underwent a stem cell harvest and additional surgery to install a shunt to alleviate brain pressure.
Her first of six intensive chemotherapy sessions commenced on December 20. Elissa and Capri’s father, Anthony, have spent over a month residing on the ward, sleeping at their daughter’s side and providing care throughout her operations, sepsis battle and recovery.
The parents also established a fundraiser shortly before Christmas, enabling both to stay at Capri’s bedside whilst helping to cover travel expenses and essential home modifications between chemotherapy cycles.
Elissa added: “We honestly didn’t know how we could afford to be by her bedside through the six rounds of chemo that she needs.”
Despite Capri’s medical challenges, her parents endeavoured to make her hospital Christmas as memorable as possible.
Elissa 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 already amassed £34,000 towards their £50,000 goal. To contribute, head to GoFundMe.
Bedford Hospital has been contacted for a response.
