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

WHEN little Rafferty Whitbread-Ward was first born he was a happy little boy and had achieved all his milestones.

But as the weeks passed and the boy started to crawl, his mother knew something was wrong.

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Samantha Whitbread from Kent said that after a while her little boy started to feel tremors in his arms and legs and his eyes started to tremble and roll back in his head.

The mother was shocked when he was diagnosed with “dancing eye syndrome,” a neurological condition that affects children.

Its medical name is Opsoclonus-Myoclonus Syndrome, which causes involuntary eye and muscle twitching.

The condition is so rare that many healthcare professionals don’t recognize it.

Rafferty was diagnosed in fall 2021 and health officials are now set to release further guidance on how to treat the condition.

Samantha said she was “glad to have her little boy back” after the ordeal that saw the Kent family make an emergency visit to the hospital.

Rafferty was treated at Evelina London Children’s Hospital (ELCH) and medical professionals there are now hoping to help the five million affected by providing advice to doctors around the world.

The week of Rafferty’s first birthday, mother Samantha said the condition had worsened.

“He was very shaky and distressed, so we had an emergency appointment at the hospital,” she said.

He was taken to ELCH, where experts determined Rafferty had a tumor in his adrenal gland that had triggered the disease.

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

“It’s such a rare disease that it took a while to diagnose it, but once they figured out what it was, it was amazing.

“He’s improved so much and little by little we have our little boy back,” Samantha said.

Experts at Great Ormond Street Hospital (GOSH) said the condition usually appears in early childhood.

It’s thought to be caused by an autoimmune disease that occurs when the body mistakenly attacks itself rather than a foreign invader like a bacterium or virus.

Doctors say a neuroblastoma tumor is found in half of the children diagnosed.

Although this may not always be the case, these are usually benign and these children undergo surgical resection and are then monitored by an oncology team.

In children who don’t have neuroblastoma, the condition may follow an infectious disease or no clear trigger can be found, experts said.

dr Ming Lim, who helped develop the new treatment guidelines, said many clinical workers have not encountered the disease in their careers because the condition is so rare and it can be difficult to identify.

“We hope that by creating this guide we can improve support for families and their doctors,” he added.

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