‘The scariest month of my entire life’: Hitchin mum speaks after acute nectotising encephalitis leaves daughter Sarah, 7, with brain damage

Hitchin girl Sarah Johnson, seven, is now recovering after acute necrotising encephalitis

Hitchin girl Sarah Johnson, seven, is now recovering after acute necrotising encephalitis - Credit: Archant

A seven-year-old Hitchin girl has been left with brain damage after what first seemed to be a simple case of flu turned out to be an extremely rare brain disease – and her family have been touched by the generosity of those who have donated money towards her recovery.

Sarah Johnson, seven, with her two-year-old brother Joseph and mum Joanne.

Sarah Johnson, seven, with her two-year-old brother Joseph and mum Joanne. - Credit: Archant

The Johnson family’s GP diagnosed Sarah’s flu-like symptoms and very high temperature as a virus, and sent her home with instructions to take painkillers.

But the condition developed into acute necrotising encephalitis, an often fatal brain condition.

Mum Joanne and dad Dion soon found themselves at Sarah’s side in hospital fearing the worst as medics did all they could to save her.

“It’s been the scariest month of my entire life and I would love for there to be more awareness of this condition,” said Joanne.

“Her father and I were told they didn’t know whether she’d even survive and that, if she did, the effects would be devastating.

“I couldn’t think that far ahead, I just desperately needed to know my beautiful daughter would survive.”

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The nightmare started on January 25, when Sarah said she did not feel well and, after seeing the GP, asked her mum to take her to hospital.

“Sarah’s temperature spiked at over 41o and was not responding to Calpol or Nurofen,” Joanne said.

“She was very drowsy and delirious, hallucinating, too. It was then I knew something was very wrong and I took her to the Lister.

“While waiting for four hours in the emergency department she deteriorated before my eyes.

“When she was finally seen by a doctor, she was very dehydrated and slipping more and more into unconsciousness.

“She couldn’t be woken up for days. They ran lots of tests before confirming she was suffering from encephalitis, brought on by influenza.”

After five days Sarah was transferred to the paediatric intensive care unit at Addenbrooke’s Hospital in Cambridge, where further tests confirmed acute necrotising encephalitis.

“The medical staff basically pumped every drug through her frail body, trying to stop its progression in damaging her brain,” said Joanne.

Four weeks on, Sarah, left, is in the post-acute phase of the disease, but everyone is pleased with her progress in learning to eat, speak and move again.

“It’s all about rehabilitation for her now,” said Joanne.

“She has been left with some brain damage. She is receiving lots of rehab therapies at the hospital and if her condition continues to improve she may be well enough for home discharge in a couple of weeks.

“Otherwise she may be transferred to a special residential rehabilitation clinic in Surrey for a month or two, specifically for children with acquired brain injuries.”

A funding page set up to raise money for Sarah’s recovery had already passed the £1,000 mark within nine days, and her family are extremely grateful for all the support.

“I have been blown away by everyone’s generosity and kindness – from friends, relatives and folk I don’t even know!” said Joanne.

“I know I have a long road ahead with Sarah as far as rehabilitation goes but – thanks to everyone’s kindness – I feel I can do my very best to help her become the funny, nutty, lively chatterbox she always was, live her life to its fullest potential and do well.”

To make a donation visit www.gofundme.com/ztk6pe4s.

Monday was World Encephalitis Day – for more information visit www.encephalitis.info.