THE MUM of a little girl who has been left blind in one eye has warned parents around the dangers of chickenpox.
Little Ruby Hopper developed the common illness in March last year.
Ruby Hopper developed a standard bout of chickenpox and had the usual rash and itching
Over a period of a month, the seven-year-old became unwell and had issues with her eyes
Now her mum Lauren (pictured together above) has revealed her little girl in only one of three people in the UK to have a rare condition known as acute disseminated encephalomyelitis (ADEM)
It was about a week after she’d had it that mum Lauren Hooper, said the seven-year-old started to feel unwell.
Around a month after she first became poorly, Ruby was diagnosed with acute disseminated encephalomyelitis (ADEM) which causes swelling on the brain.
She is believed to be one of only three people in the UK that has the condition and will need lifelong treatment.
The condition often follows from a minor infection like chickenpox or the common cold.
She can no longer see out of her left eye, suffers regular debilitating migraines and can often lose mobility in her legs.
Mum Lauren, 27, said that Ruby’s experience of chickenpox had been ‘fine’.
“She just had the spots and was itching,” Lauren said.
“Her little brother got it as well and I remember thinking, ‘I’m so pleased we’re finally getting it over and done with’.
“I know chickenpox can be quite dangerous for adults but you never expect any after-effects for children. We weren’t prepared for what was going to happen next at all.”
Ruby initially presented with a pain in her eye so Lauren took her to the doctors that day and was told it might be the start of conjunctivitis.
But as the day progressed, Ruby was unresponsive and the family rushed her to A&E.
Lauren said: “She was wearing sunglasses at this point because she couldn’t look at the light, her temperature was sky high and she couldn’t stand properly.
“We were just really panicking – I was worried it was sepsis because she had that as a baby when she was born at 31 weeks premature.”
Finally, Ruby was seen by a doctor, but Lauren said they diagnosed the little girl with flu and sent her home.
Over the next few weeks, Ruby continued to deteriorate and Lauren took her back to the GP on three other occasions.
She said: “Each time they told me it was effects of the flu. She couldn’t walk, she had a pain in her eye and she couldn’t go to the toilet.
“Eventually we had to put water over her bottom half to stimulate her to wee.
“On one visit to the GP, they managed to get a tiny urine sample from her, said there was signs of an infection and gave her some antibiotics.
“There was a little improvement but it took her about four weeks to regain the use of her legs.”
What is acute disseminated encephalomyelitis (ADEM) and what are the symptoms?
Acute disseminated encephalomyelitis (ADEM) is a rare inflammatory condition that affects the brain and spinal cord, experts at Great Ormond Street Hospital (GOSH) state.
The medics said that the condition often follows on from a minor infection.
This can include, chickenpox, as seen in Ruby’s case and also applies to colds.
It happens as the result of the immune system becoming mis-programmed, and activating immune cells to attack the healthy myelin (a fatty protective coating) covering the nerve.
The experts said the symptoms usually come on quickly over hours to days.
“Symptoms may include nausea and vomiting, headache, irritability and sleepiness, unsteadiness or inability to walk, problems with vision, weakness or tingling in certain areas of the body. In severe cases seizures can result.
“The symptoms depend on where in the brain or spinal cord the inflammation and swelling is occurring,” the guidance states.
Then a month after Ruby had become unwell, her parents, Lauren and Liam noticed Ruby’s right eye had started to stray and took her to an optician.
Lauren said: “As soon as the optician looked at her eye, he said she needed to go to the hospital. He said there was either something blocking the optic nerve at the back or the optic nerve was dead.
“We were at the hospital for three days and Ruby had multiple scans, blood tests and x-rays to find out what was wrong.
“Finally we were told it wasn’t flu and that she had ADEM.”
The virus from Ruby’s chickenpox had led to an infection on her brain which caused the swelling brought on by ADEM.
The NHS says ADEM sees the “immune system becoming mis-programmed” and immune cells start attacking healthy nerves.
The inflammation had put pressure on Ruby’s optic nerve and spinal cord, causing the symptoms she had experienced.
Lauren said: “I just remember asking so many questions but there isn’t much known about it – there are so few people with it in the UK.
“What we do know is that because it wasn’t caught early, there is no treatment to cure it. If it had been noticed early enough, she would have been put on steroids and that would have brought the inflammation down.
“Now all we can do is make sure we spot any symptoms before they cause any more lasting damage.”
Because of Ruby’s condition, the family now see a number of specialists on a regular basis.
Now, Lauren said she feels angry that this has happened to her little girl.
“I feel sad and sorry that her normal childhood has been taken away from her.
“ADEM has also triggered puberty, so she’s developing hair, she gets belly pains, but she’s only in Year 2 so it’s very isolating for her because none of her friends are going through it.
“It’s very hard for us as a family. She doesn’t cope very well a lot of the time.”
Despite that, Ruby has big aspirations and lots of hobbies and Lauren is determined to nurture them and encourage her daughter to achieve whatever she can.
She said: “She loves going to concerts, she’s such a big fan of George Ezra, and she loves going to the caravan so we try to go there as often as possible.
“She wants to be a teacher and I hope she can get there one day.”
Ultimately, the family want to raise awareness of the disease and encourage other parents to ask about it if they spot the symptoms which include eye pain, high temperature and a weakness in limbs.
Lauren said: “Ruby is now a case study for ADEM and it’s being taught in universities up and down the country.
“It’s too late to stop this happening to Ruby but if we can stop it happening to other children, we want to help as much as we can.”
Leeds Teaching Hospitals Trust has apologised for the care Ruby initially received.
Medical Direction, Dr John Adams, said: “We have met with Ruby’s family to discuss their concerns and our clinicians have carried out a full review of her care and shared the findings.
“Our teams continue to support Ruby and her family with her ongoing healthcare for this incredibly rare condition.”
Ruby is now a case study for the condition, with experts using her case as an example up and down the country Read More