Family’s fight to save son battling rare cancer as ‘NHS options are running out’
A six-year-old boy is battling a rare stage 4 cancer, initially misdiagnosed as an ear infection.
Sebastian Nunney’s parents were given the devastating news their son had aggressive neuroblastoma in July 2020.
Lindsay and Greg Nunney said they struggled to obtain an appointment at their local GP in Kettering due to Covid-19 restrictions that were in place at the time and were given antibiotics after a short examination of Sebastian’s ear.
Just two weeks later, however, he was diagnosed with the aggressive cancer, with his parents now hoping to raise £250,000 to send him abroad for treatment.
Following a complaint by the family, the General Medical Council investigated but concluded it didn’t represent a serious failure to provide appropriate care. The doctor in question was provided with more training.
For his parents, it was clear immediately that there was something “very, very wrong” with their son, who was then aged three.
“In a matter of weeks, he was breathing rapidly, his heart rate was up, he didn’t want to eat anything,” Mrs Nunney said.
As an aggressive tumour pressed on his lungs, his parents noticed how he’d flop to the side in the car and was unable to walk up the stairs.
With social distancing restrictions still in place, his parents spent 45 minutes on the phone to their GP going through his symptoms before being given an appointment.
Their doctor, who was fully dressed in PPE, examined their son and diagnosed him with an ear infection, despite his mother raising further concerns, showing pictures of his dramatic weight loss and Sebastian appearing visibly in pain.
“The doctor actually said it could be an ear infection because there was some redness in his ear,” Mrs Nunney said. It was also suggested that “behavioural problems” could be the cause, as Sebastian had been referred to a paediatrician over a possible autism diagnosis.
After antibiotics failed to make a difference to his condition, his parents took him to an urgent care centre, where he was placed on a monitor and rushed by ambulance to hospital. An X-ray quickly showed a large mass from his abdomen to his throat, and he was blue-lighted to Queen’s Medical Centre in Nottingham.
It was there that his parents received the devastating news that he had been diagnosed with stage four neuroblastoma, a rare cancer that mostly affects children and babies.
“When we made the complaint, I think we were very raw,” Mrs Nunney said. “We were talking a matter of a few weeks from him being unwell to really unwell. We were really angry and felt things hadn’t been dealt with properly. We were beating ourselves up wondering if those two weeks made a difference as it was an aggressive tumour.”
After diagnosis, the family was told Sebastian was unlikely to survive the disease. Soon after, he underwent a tracheostomy and was placed on a ventilator and the family spent the next five months living at the hospital.
In January 2022, they were given the positive news that his tumour had shrunk but doctors later discovered it had reappeared on his leg. Despite undergoing gruelling chemotherapy and radiotherapy treatment, the family has been dealt a further blow as the tumour has spread to his pelvis and head.
After being told that they were running out of options for NHS treatment, they have begun exploring alternatives abroad, including CAR-T cell therapy which is available in America and Italy.
They have now launched an appeal to ensure that they are in a position to pay if a treatment programme becomes available.
“Seb is a trooper, he pretty much does most of it with a smile on his face,” Mrs Nunney said. “The worst was when he was in pain after the radiotherapy as he was struggling to walk. He’s now on different medication but on proper pain relief, so he’s pretty much back to his bouncy self.”
To draw attention to their cause, they have set up an Instagram and Facebook accounts under the name Team Sebastian, where they share cooking videos and pictures of their son’s progress.
The family is also keen to raise awareness around the disease and to encourage other parents to follow their gut instincts if they notice a difference in their child.
“It seems to be a common theme with neuroblastoma that a child is well and then becomes seriously unwell. As a parent, if you think it’s not normal, it’s important to keep pushing. We’re keen to raise awareness to make sure parents, as nicely as possible, challenge and push if they know something is not normal for their child.”
