A Teesside teenager suffers from a rare brain condition that causes up to 10 seizures a day and has taken away her ability to walk.
For years, Neive Williams' family - who live in Stockton - watched helplessly as her symptoms of a rare inflammatory brain disease, Rasmussen’s encephalitis, worsened.
What began as brief "vacant episodes" at primary school for the slowly developed into relentless seizures.
Neive's mum, Fiona Williams, said: "Neive was fine until she was four or five, when she started having brief vacant episodes at school, but for months people didn't realise they were seizures.
"It was only when Neive started to go limp that they realised it was due to seizures, but doctors couldn't identify why she was having them."
Neive Williams' suffers from a rare inflammatory brain condition - now she hopes new research could help other children with the disease.
(Image: Fiona Williams via Action Medical)
After suffering from a major seizure, scans eventually revealed an abnormality on Neive's brain- but by then the disease had already taken a devastating toll.
Despite taking several epilepsy medications, Neive's seizures continued - reaching as many as 10 per day.
Fiona said: "One of the hardest things with the condition is that the drugs would help for a little while, but nothing stopped the seizures."
Neive Williams' suffers from a rare inflammatory brain condition - now she hopes new research could help other children with the disease.
(Image: Fiona Williams via Action Medical)
As the seizures continued, Neive developed weakness down the right side of her body and began experiencing epilepsia partialis continua (EPC), a condition that causes continuous involuntary muscle jerking.
"She became weaker and weaker and eventually she needed a wheelchair," Fiona said.
Rasmussen's encephalitis predominantly affects children and causes frequent seizures, progressive weakness on one side of the body, learning difficulties, and in some cases severe speech and language problems.
Neive Williams' suffers from a rare inflammatory brain condition - now she hopes new research could help other children with the disease.
(Image: Fiona Williams via Action Medical)
The condition is so rare that many medical professionals will never encounter a case.
For Neive and her family, the toughest decision came in 2022 when doctors recommended a hemisphere disconnection operation, a major procedure that disconnects the affected half of the brain.
The surgery is currently the only way to stop the seizures caused by Rasmussen's encephalitis, but it carries significant risks, including permanent effects on speech and vision.
"Having to say yes to the surgery was very difficult but the operation was life-changing," Fiona said.
Since the operation, Neive has been seizure free - but the impact from years living with the condition have not disappeared.
Fiona added: "The EPC jerking has gone, but the years of illness have left Neive with ongoing physical challenges, including scoliosis and hip problems caused by weakness and overcompensation on one side of her body."
Now aged 16, she and her family are backing new research launched by scientists at UCL Great Ormond Street Institute of Child Health, which aims to improve understanding of Rasmussen's encephalitis.
Neive Williams' suffers from a rare inflammatory brain condition - now she hopes new research could help other children with the disease.
(Image: Fiona Williams via Action Medical)
Researchers hope to identify biological clues that could lead to earlier diagnosis and more effective treatment.
Dr Eva Ioannidou, who is leading the study, said early diagnosis is crucial because irreversible brain damage has often already occurred by the time the disease is confirmed.
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The project will examine brain tissue, blood samples and cerebrospinal fluid from children affected by the condition to try and understand what drives the disease.
Fiona believes the research could be vital for future families.
She said: "Rasmussen's encephalitis is so rare and there's still so much doctors don't know.
"Research is incredibly important because earlier diagnosis and better treatments could make such a difference for families like ours."