Mystery of man's sudden and unexplained paralysis SOLVED after 25 years

When Timothy Bingham was just two years old, he became seriously ill as what started as a mild flu quickly turned into a full-blown paralysis. At the time, his family weren't too concerned about his symptoms until what appeared to be a mere flu left him unable to walk.

Following a separate infection just three years later, Timothy became paralysed and ever since has been living his life confined to a wheelchair. What happened to him became a 25-year-long mystery, as doctors could not explain how a mild bout of infection would leave the child with such devastating results.

Tim's mother, Kate Bingham, who lives in Cheltenham with her son, explained: “About 25 years ago, Tim got a flu-like infection and a temperature. What seemed like a minor illness had devastating consequences. The attack, and subsequent attacks, did terrible damage. First to his legs, then his arms, his face and his chest.

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“And now he needs 24-hour care. His diaphragm barely works at all, so he can’t cough. It’s hard for him to chew, and he can’t drink unassisted. He can’t move in bed, so he needs turning throughout the night. The things we all take for granted he can’t do."

Now 28 years old, Tim spent the vast majority of his life unaware of the cause of his condition – until a discovery at the University of Manchester. In 2011, doctors at the Royal Manchester Children's Hospital saw an eight-month-old girl who previously had been completely fit and well until a mild chest infection.

The infection soon developed and left her unable to breathe without the support of a ventilator. It was then that they considered this could be a genetic cause, as the baby girl's two siblings had also experienced severe problems following a mild infection.

Thanks to the work of genetic researchers at the University of Manchester, it's been discovered that changes in a gene called RCC1 led to this severe nerve damage in both Timothy and the family in Manchester. As a result, a further 20 children from 10 families from the UK, Türkiye, Czechia, Germany, Iran, India, Saudi Arabia, Cyprus, and Slovakia have been found to have changes in the same gene, which lead to severe nerve conditions, all triggered by mild infections.

Doctors suspected in more than half of the children that the diagnosis of a different severe nerve condition called Guillain-Barré syndrome can develop after infection. This groundbreaking discovery has given Kate the answers her family needed after all these years.

She said: “As Tim’s mum, the discovery of a gene which is linked to what happened to Tim means everything to me. For so long we have lived with the uncertainty of not knowing the full picture.

"This breakthrough brings us great hope, as it will to all those people who have waited years for answers. This is something that helps us look to the future. I’m proud of how strong Tim has been. He now has a girlfriend he met online who is wonderful. He proves there is life beyond disability.”

Researchers were able to perform studies on skin cells taken from patients and use specially genetically engineered fruit flies to highlight that the damaged nerves can be as a result of certain chemicals. When looked at under a microscope, these skin cells can show changes similar to those seen in cells of patients suffering from motor neurone disease – a condition in which the muscles, including those that help you to breathe and swallow, become weak.

Bill Newman, Professor of Translational Genomic Medicine at the University of Manchester and Rare Conditions Co-Theme Lead at the NIHR Manchester Biomedical Research Centre, helped to lead the seminal study. The research has since been published in the Lancet Neurology journal.

He shared: “Until this study, little was known about why some people experience severe nerve damage after they have had a mild infection like the flu or a stomach upset. This work provides families with an explanation and is the first step in us developing an effective treatment.

"As children are well before they develop nerve damage following an infection, this gives us an opportunity to treat at-risk children before problems occur. The similarity with Guillain-Barré syndrome and with conditions like motor neurone disease may help us understand these more common conditions and why some people are at greater risk and what treatments may be effective."