How a Swindon boy survived meningitis, a coma and paralysis

Seven days in a coma, seizures, paralysis, and being unable to speak were just some of the things the bright young boy had to fight against after being ravaged by meningitis. 

Mum of five Rebecca Kennedy, 35, had grown worried about Toby, who was seven at the time, as the young boy was starting to become increasingly ill and was missing a lot of school because of what she thought was a stomach bug and a high temperature. 

The full-time carer said: “At first Toby seemed to have come down with a stomach bug. He was sick and had a neck ache and a temperature.

“He then started having seizures. His body flapped around, and I had to hold his neck up.”

She was initially told to 'monitor him' but decided against that advice and took him to Great Western Hospital in Swindon where he was diagnosed with pneumococcal meningitis - a severe form of the disease. 

"He had a CT scan, and they could see a cloud of what they thought was meningitis but he was transferred to Bristol Children's Hospital for more testing,” Rebecca said.

"I was in shock - I just didn't know it was possible for him to have meningitis when he had been vaccinated.

Toby during is induced medical coma (Image: Rebecca Kennedy)

Toby was then rushed to Bristol Royal Hospital for Children but by that time the damage to his brain was caused by a bleed and his seizures were so severe that doctors were left with no choice but to put him in an induced medical coma. 

He then stayed in a coma at the hospital's paediatric intensive care unit for eight whole days while Rebecca had to sit by her lifeless son's side and hope that he would recover enough to come out of it. 

"I was seconds away from losing him," Rebecca said. 

"I had that mother's instinct where I knew what was best for my boy. But it really was a case of minutes making a difference."

At the time, Rebecca had three other children aged 15, 16, and 18, and was pregnant with another on the way. She recalls struggling with it all after being told that he had a 9 per cent chance of surviving, meaning he might never meet his new sibling. 

"I just wanted to take it away from him. He's too good for meningitis," she said.

After eight days Toby was miraculously well enough to come out of the coma and things started to look better - although the ordeal had taken its toll on him. 

Upon waking, it was discovered that Toby was totally paralysed, blind, deaf and dumb, unable to remember almost anything in his life, and had no control of his bowel movements. 

Rebecca said: "The boy he was before was completely gone. He was an amazing boy. He loved flossing, and dancing, he was into gaming, and he loved his Nintendo Switch, and seeing his friends."

It was then decided that Toby would undergo an intense course of therapy and treatment, during which Rebecca was put up at a Ronald McDonalds home in Bristol so she could be there to support him.

Around halfway through this treatment Toby had already seen a vast improvement

"He made so much progress,” Rachel said at the time, adding, “His sight and hearing has returned, he's able to move his arm and is starting to move his leg, sometimes he sort-of hugs me which makes me think he's coming back.”

Toby was wheelchair-bound after making extensive improvements following weeks of therapy and treatment (Image: Rebecca Kennedy)

Even with these small improvements, Rebecca sadly missed spending Christmas with all of her children.

"I couldn't bring him home for Christmas because he wasn't well enough. I went back to see my other children and I love them to bits but on the day, I could just see Toby there as I came down the stairs saying, ‘I've opened my presents mum' and it felt like I was doing something wrong.

But as time went on Toby kept improving and by the time, he’d spent eight months at the hospital’s high-dependency unit he had slowly but surely learned to walk and function again. At this time, he was able to go home for visits, and miraculously on Becky’s birthday - 26th February - he took his first steps since the illness struck.

She said: “It was amazing, it was the best birthday present I could have ever wished for.

“He went back to the ward and showed off to the nurses. They couldn’t believe it.”

Toby, who now has the mental age of a two-year-old, is now back at home and can now eat and drink after months of being tube fed. He has learned to say ‘mum’ and ‘no’ again and 'yeah' and can communicate non-verbally.

While he no longer needs to use a wheelchair, he still hasn’t regained the use of his left arm and the use of his left leg still isn’t great, and he is now receiving one-to-one education from Brimble Hill special educational needs school.

“He walks beautifully, and he doesn’t need his wheelchair, “Rebecca said

“He has lots of therapy at school and using his left leg more is his next milestone.

“Every time he recovers a little bit, it puts a smile on my face. He’s a cheeky monkey and he loves winding up his new little baby brother, Theo.”

Toby dressed up for Halloween and dressed up as Spider-Man just because (Image: Rebecca Kennedy)

Photos of Toby now show him enjoying time with Theo, dressing up as Dracula on Halloween and dressing up as Spider-Man – just because he wanted to.

While Rebecca is thankful that Toby has had a miraculous recovery from what should have been a deadly disease, she is now urging other parents to be aware of the warning signs of meningitis so that they might not have to go through what she went through.

She said: "I miss all the little things. I don't want someone else to miss them too. I don't want people to take them for granted. A lot of people think meningitis is just a rash, but it had taken my boy away. So please, listen to your instincts.”