A SIX-year-old boy who was battling cancer after a doctor dismissed his symptoms as an “ear infection” or “possible autism” has died.
Sebastian Nunney was diagnosed with neuroblastoma in 2020, months after falling ill.
Parents Lindsay, 41, and Greg, 43, raised more than £130,000 to pay for potentially life-saving treatment in the US, but revealed yesterday their son had lost his battle against the disease.
Announcing the death of their “beautiful boy” on social media, the couple, from Kettering, Northamptonshire, wrote: “We are heartbroken to tell you that after three-and-a-half years of fighting neuroblastoma, our beautiful boy passed away this morning.
“He was very brave, and it was peaceful and pain free at the end.”
Sebastian was diagnosed with cancer months after complaining of an ear ache and his parents noticing his weight had plummeted.
Lindsay was initially told he had probably developed an infection when she took him to a GP when he was three years old.
The family complained about the doctor and she was ordered to undergo further training following an investigation by the General Medical Council.
Linsday, who fell pregnant with Sebastian after undergoing IVF, said previously: “He was clearly in pain and didn’t want to be examined.
“It was at the peak of Covid so the GP had full PPE on and I got the impression she wanted us out of there as quickly as possible.
“At the time, doctors did not want to do face-to-face consultations but we really pushed for it because Sebastian had lost a lot of weight.
“I even showed her photographs of Sebastian just a few weeks earlier to try and show her how much weight he had lost.
“The doctor actually said it could be an ear infection because there was some inflammation in the ear.
“She read in the notes there had been a referral to see a paediatrician because Sebastian could be on the [autism] spectrum and she said, ‘Oh yes I see there might be some behavioural problems’.”
Common signs of autism in children include not responding to their name, avoiding eye contact, getting very upset if they don’t like a certain taste, smell or sound, and repetitive movements.
An ear infection can cause pain, a high temperature, vomiting, a lack of energy, and difficulty hearing, and usually clears within three days.
In July 2020, Sebastian’s parents took him to hospital after he became increasingly weak and tests showed his oxygen levels were dangerously low.
He had an X-ray which revealed a large mass in his chest and further tests revealed he had neuroblastoma – a rare cancer that mostly affects babies and children.
Neuroblastoma is a type of cancer that develops in nerve cells that have been left behind from their development in the womb.
It usually develops in the adrenal glands next to the kidneys but can also form in the spinal cord, neck, chest, pelvis or abdomen and is able to spread to other organs.
It is unknown what causes the cancer but it affects around 100 children in the UK every year.
It is most common in kids under the age of five. It is very rare in older children, teenagers and adults.
The outlook for children diagnosed with the condition varies and mainly depends on whether the cancer has spread.
The early signs and symptoms of neuroblastoma can be very hard to spot, especially in young babies, as they can be mistaken for other common conditions.
However, according to the NHS and Cancer Research UK, signs include:
Treatment can involve surgery, chemotherapy, stem cell transplant, radiotherapy and immunotherapy.
Source: NHS and Cancer Research UK
He was rushed to Nottingham‘s Queen’s Medical Centre and placed on a ventilator and underwent a tracheostomy so a tube could be inserted into his windpipe.
The pair took turns on the bedside vigil where a heavily sedated Sebastian was started on a gruelling 80-day chemotherapy programme.
English teacher Gregg said: “He looked like Doctor Octopus with all these tubes and wires. Nobody thought he was coming out of PICU.
“They took us to the room of doom again and said, ‘He’s never coming out’. We were just numb at that moment.”
Despite the odds being stacked against Sebastian, the brave youngster battled back and his tumour shrunk so much that doctors hailed it a “miracle”.
But last year, medics discovered a cancerous growth in his leg and blood tests revealed the disease may have returned.
He was in so much pain he just wanted to sleep and cry all the time.
Gregg
Gregg said: “At the end of May Sebastian was still suffering – he was sore and tired – very upset, falling asleep at school, and refusing to eat.
“It felt very much like his symptoms when he was first diagnosed.
“We were reassured that this was just his response to the radiotherapy, that he was just fed up after three years of treatment, and to just let him rest.
“He was in so much pain he just wanted to sleep and cry all the time.
“An MRI scan on June 20 showed abnormal tumours in his pelvis, the base of his skull and the soft tissue around his eyes.
“At the point we got the results, we were basically told that there isn’t much hope now and we will try and find something to manage his pain.”
While undergoing treatment on the NHS, the family launched an appeal to raise £250,000 to send Sebastian abroad for potentially life-saving therapy.
During fundraising events, schools, businesses and community groups were encouraged to wear orange to support Sebastian, as it was his favourite colour.
The family said any leftover funds will be donated to a UK charity “focusing on fighting this rare disease”.
