18-year-old Rory Johnson of Osbaldwick Lane, York, loses battle with ADEM, a rare disease of the brain and spinal cord (From York Press)

18-year-old Rory Johnson of Osbaldwick Lane, York, loses battle with ADEM, a rare disease of the brain and spinal cord

10:59am Thursday 26th November 2009 in

• Skip social links
• Print
• Email
• Comments(0)

HE was a fit and athletic teenager who loved playing football and running.

But today Rory Johnson’s family was in mourning after doctors lost a desperate three-week battle to save the 18-year-old from a one-in-2.5 million disease of the brain and spinal cord. His mother, Valerie McMullan, revealed how at one point, while Rory lay in intensive care at York Hospital, his brother Danny, 20, also had to be brought in suffering from similar symptoms. “I had Rory in a bed to one side of me and Danny in one on the other side,” she said. “I almost passed out. Fortunately, Danny has since recovered, although he still needs further tests.”

Mrs McMullan said medics had been baffled for days by Rory’s swift deterioration, and tested him for everything from meningitis to swine flu.

But he was eventually diagnosed as suffering from the severest form of ADEM.

“To suffer it that badly is a one-in-2.5 million condition,” she said. “He was like a plane which goes into a tailspin which cannot be reversed.

“The whole family is absolutely devastated. It’s an absolute tragedy.

“I always called him my golden boy, although he always said: ‘No, Mum, I’m ginger!”

She said Rory, of Osbaldwick Lane, a former Minster School and Howsham School pupil, who was studying plumbing at York College when he fell ill, had always been very athletic with a huge appetite, and it had been shocking to see how quickly he had deteriorated.

“He played football for Burnholme. He came in starving one Thursday night after playing five-a-side. He had suffered a bad cold the week before, with a sore throat.

“The following evening he started feeling sick.”

She said doctors initially thought that Rory, whose father, Mick Johnson, is landlord of the Magnet pub in Osbaldwick Lane, was suffering from a stomach bug.

However, after the vomiting got worse and he began complaining of pains in his chest and limbs, and he suffered two fits, he was admitted to hospital where he soon became almost hysterical. “The sweat was pouring off him and he had gone blind.”

Rory, who had a girlfriend, Kim Bostock, was given scans and anti-virals and antibiotics, while doctors tested him for the 15 most likely causes of his condition.

After four days, ADEM was diagnosed and he was given a massive dose of steroids in a bid to counter the effects.

Then Danny began feeling sick and also suffered two fits, and he too was taken into intensive care for one night before recovering.

As Rory deteriorated further, he was taken to Hull Royal Infirmary for an operation to relieve the pressure in his brain in a bid to save him, but it was in vain.

Valerie praised the nurses and doctors in intensive care at York and Hull, who were always at Rory’s bedside.

“They could not have done more. They were wonderful.”

•Rory’s coffin will be received into St Aelred's Roman Catholic Church in Fifth Avenue at 5.30pm today, followed by a Requiem Mass at 11.30am tomorrow.

The collection will be in aid of the Brain And Spine Foundation, which carries out research into conditions, including ADEM.

What is ADEM?

ADEM stands for Acute Disseminated Encephalomyelitis, a disease of the brain related to the autoimmune system, which usually occurs following a viral infection.

It is similar to multiple sclerosis and has an incidence rate of about 8 per one million people per year, with about five per cent failing to recover. Most cases happen in children and adolescents.

Myelin around the brain and spinal cord is destroyed by white blood cells created through an over-response of the immune system.

Tributes on Facebook

Benjamin Roach – Really going to miss u bro, you’re a mate that will never be forgot. You always had a smile on your face n that's how you’ll be remembered. Rest in peace Pickle.

Kim Bostock – RIP Rory. I loved you so much. I never will stop lovin u. You’ve gone to a better place now. I’ll miss you so much. I love you hasa.

James Holmes – RIP mate, you will be sadly missed, will give you the send off u deserve.

Dean Barrett – RIP Rory mate, will be sadly missed by all the boyz.

Andrew Gorden Webster – Rory you were a Legend.

Rory wanted to donate organs

RORY signed up just months ago to donate his organs to help other people if he ever died.

His mother Valerie said doctors were all set to go ahead with a transplant operation, but called it off at the last minute, because they found a micro-plasma infection in his blood.

Please use the comments facilities to express your condolences...