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My son’s ‘dancing eye’ was warning sign of disease so rare most people will never have heard of it

WHEN little Rafferty Whitbread-Ward was first born, he was a happy little boy and had been reaching all of his milestones.

But as the weeks went by and the youngster started crawling, his mum knew something wasn't right.

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Rafferty Whitbread-Ward was healthy when he was first born and was hitting all the usual milestoneCredit: PA
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He was taken to hospital and treated for a rare neurological disease that attacks childrenCredit: PA

Samantha Whitbread, from Kent, said that after a while, her little boy experienced tremors in his arms and legs, and his eyes started shaking and rolling back in his head.

The mum was shocked when he was then diagnosed with 'dancing eye syndrome', a neurological disease that attacks children.

Its medical name is Opsoclonus-myoclonus syndrome, which causes involuntary eye and muscle twitching.

The condition is so rare that many health professionals do not recognise it.

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Rafferty was diagnosed in Autumn 2021 and health officials are now set to publish further guidance on how the condition should be treated.

Samantha said she is 'glad to have her little boy back' after the ordeal, which saw the Kent family make an emergency visit to the hospital.

Rafferty was treated at Evelina London Children’s Hospital (ELCH) and medics there now hope to help the five million sufferers by providing guidance for doctors around the world.

During the week of Rafferty's first birthday, mum Samantha said the condition worsened.

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"He was really shaky and distressed, so we had an emergency appointment at the hospital," she said.

He was taken to ELCH where experts found Rafferty had a tumour in his adrenal gland that had triggered the illness.

“We got straight on to a cancer treatment pathway at the Royal Marsden Hospital, he had surgery, steroid treatment and physical therapy.

“It’s such a rare disease, it took a while to get the diagnosis, but as soon as they worked out what it was, it was amazing.

“He’s improved so much and bit by bit we’ve got our little boy back," Samantha said.

What are the symptoms of dancing eye syndrome you need to know?

The signs of opsoclonus-myoclonus syndrome don't always appear at the same time.

Here are the signs you need to look out for:

  • muscle jerks
  • floppiness
  • feeling tired
  • behaviour issues
  • irritability
  • sleep issues
  • speech difficulties
  • rapid eye movements

Experts at Great Ormond Street Hospital (GOSH), said the condition usually arises around early childhood.

It's thought to be caused by an autoimmune disorder which occurs when the body mistakenly attacks itself rather than a foreign invader such as a bacterium or virus.

Medics say that half of children diagnosed are found to have a neuroblastoma tumour.

While it might not always be the case, these are usually benign and these children have to undergo surgical resection and will then be monitored by an oncology team.

In children who do not have neuroblastoma, the condition may follow an infectious illness or no clear trigger may be found, experts said.

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Dr Ming Lim, who helped develop the new treatment guidance said that because the condition is so rare, many clinical staff won’t have come across the condition in their careers, and it can be difficult to identify.

“We hope that by creating this guidance, we can improve support for families and their clinicians," he added.

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Bit by bit, the family said they have managed to get their little boy backCredit: PA

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