Family ‘blessed’ now Evie’s got a new lease of life

Evie Harnes-Carson is 'doing wonderfully' after taking Tocilizumab
Evie Harnes-Carson is 'doing wonderfully' after taking Tocilizumab
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A MUM has spoken of how her daughter was left unable to get out of bed after being diagnosed with arthritis – aged three.

Evie Harnes-Carson’s parents feared she had leukaemia or meningitis when she first fell ill. But the Livingston couple were shocked to learn Evie was in fact suffering from a rare type of arthritis – a condition many people associate with the elderly.

Now aged four, Evie’s life has been transformed by a new drug which has just been approved for prescription.

Mum Sandra, 31, a zumba instructor, said: “Evie became very ill very quickly, but not in the usual viral way that youngsters do.

“There were huge spikes in her temperature and she couldn’t get out of bed, she couldn’t walk, we couldn’t even dress herself.

“She had all the symptoms of meningitis so I called an ambulance straight away, but then her temperature began to subside by the time she got to the hospital.

“But the symptoms kept coming back and disappearing.

“We were going back and forth to accident and emergency and this went on for several days.”

Despite repeated examinations and tests, doctors were no closer to discovering what was wrong.

Evie was eventually admitted to the specialist rheumatology department, where she was diagnosed with systemic juvenile arthritis, leaving Sandra and dad Mark Carson, 41, stunned.

“We were shocked when we found out,” said Sandra.

“I had heard of juvenile arthritis, so I knew young people can suffer from arthritis, but we couldn’t believe Evie was suffering from the most severe form.

“Some people just associate arthritis with sore joints, but there’s a world of difference between normal juvenile arthritis and Evie’s condition.”

Evie was then put on high doses of steroids, which greatly improved her symptoms, but their side effects took their toll, affecting her bone density and weight. Then she was prescribed with a drug which was being trialled, Tocilizumab.

On Monday, the drug, which previously could only be given to children being seen by a specialist, was approved by the Scottish Medicines Consortium to be prescribed by doctors.

“Within two to three days of being given Tocilizumab we saw an improvement in Evie,” said Sandra.

“It was almost as though whatever was causing the illness had been switched off.

“Now, she is doing absolutely wonderfully and we are expecting her to start school this year, whereas before we thought she might have to wait.

“The only symptom she has now is tiredness, because she never stops running about.

“Tocilizumab really is a wonder drug and I’m so glad that now anyone who sufferers from this illness in Scotland has access to it.

“It’s all down to Dr Joanna Walsh at the Edinburgh Sick Kids, who made the application for Evie to get this drug.”

“We really feel blessed.”