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Mom’s heartache after son crushed with rare ‘Dancing Eye Syndrome’

The tumor triggered a rare condition known as Opsoclonus-Myoclonus Syndrome. Also known as “dancing eye syndrome,” the condition is a neurological disorder that affects children.

Rafferty was diagnosed with opsoclonus-myoclonus syndrome by experts at Evelina London Children's Hospital
Rafferty was diagnosed with opsoclonus-myoclonus syndrome by experts at Evelina London Children’s Hospital

A mother has spoken openly about her relief at having her ‘little boy’ back after experts at Evelina London Children’s Hospital (ELCH) found and treated a tumor in her son Rafferty’s adrenal gland.

The tumor triggered a rare condition known as Opsoclonus-Myoclonus Syndrome. Also known as “dancing eye syndrome,” the condition is a neurological disorder that affects children.

It causes involuntary eye and muscle twitching and is so rare that many health professionals fail to recognize it.

Speak with kent livesHis mother Samantha Whitbread said: “When Rafferty was first born he was a very happy boy and fulfilled all his milestones.







Rafferty has been diagnosed with opsoclonus-myoclonus syndrome, which causes involuntary eye and muscle twitches
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Picture:

PA)

“But within the same month that he started crawling, we noticed that development was slowing down.

“After a while he started shaking in his arms and legs and his eyes started shaking and rolling back in his head. The week of his first birthday he was very shaky and distressed so we had an emergency appointment at the hospital.”

Experts at the hospital are now hoping to help the five million affected by providing guidance to doctors around the world.

Samantha Whitbread said her son Rafferty received “amazing” care after he was diagnosed there last year.

She continued: “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, it took a while to diagnose, but once they figured out what it was, it was amazing. He’s improved so much and little by little we got our little boy back.”

dr Ming Lim, who helped develop the guidelines, said, “Because opsoclonus-myoclonus syndrome is so rare, many clinical workers have not encountered the disease in their careers and it can be difficult to identify.

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







Rafferty with mother Samantha Whitbread and her partner Nathan Ward
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Picture:

PA)

Large hospital on Ormond Street says the condition has several symptoms to be wary of.

Information on the hospital’s website reads: “The symptoms of opsoclonic myoclonus syndrome vary widely and may not all appear at the same time.

“Typically, Opsoclonus myoclonus appears between one and two years of age, but can appear at any time during childhood.

“Unsteadiness (ataxia) and muscle twitches affecting all or some areas of the body are usually the first symptoms to appear. Muscle tone appears to decrease, leading to limpness and lethargy (tiredness). Behavior problems, irritability, and trouble sleeping are also present.

“These symptoms tend to come on fairly quickly and often result in a loss of skills like sitting and walking within a few days. Speech difficulties also occur, such as losing previously fluent speech or not speaking at all. Rapid eye movements are one of the ways to develop later symptoms.”

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https://www.mirror.co.uk/news/uk-news/mums-heartbreak-after-son-struck-26972698 Mom's heartache after son crushed with rare 'Dancing Eye Syndrome'

Fry Electronics Team

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