Wanted: Brighter future for boy who can’t smile

A FAMILY in South Yorkshire is hoping researchers can find out why their nine-year-old boy is unable to smile.

Harvey Hole was born with a rare congenital condition which means he has a facial paralysis and cannot blink, smile or frown.

His parents are hoping to raise £250,000 for a research trust to study the causes of the rare condition, called Möebius Syndrome.

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Despite his condition, Harvey keeps his family and friends laughing with a constant stream of jokes and is also doing well at school.

His mother Kelly Hole, 34, from Bolton-on-Dearne, said: “He’s quite a funny and cheeky lad and loves telling jokes.”

When Harvey was born his problems became immediately apparent and he was taken into a special care unit at Barnsley Hospital.

Mrs Hole said: “It was obvious he had an inability to suck. I was devastated. The paediatric consultant told us he had this rare condition.

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“Babies with the condition have problems with communicating and with walking and their sight.

“The future looked bleak for Harvey and the doctors made out a case for what he wouldn’t or couldn’t be able to do as opposed to what he could. They were wrong.

“It was tough for the first year and he had to be fed every three hours, day and night. It could take an hour to get an ounce of milk into him and he was tube-fed for the first week.

“But as time went on he taught himself to get milk from a bottle. The higher-calorie milk built him up.

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“He went from strength to strength and he is a fantastic kid. He still has appointments to look at his eyes and feeding.

“He couldn’t have solid food so we had to puree everything.

“But gradually he learned how to manipulate food on his cheek.

“He has a smaller tongue so has to deal with that too.

“His teeth don’t come together and he can’t close his lips but he’s blossoming into a lovely, intelligent nine-year-old lad.

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“He is so happy with life and that is what really matters. He has a wicked sense of humour and he’s a right one for the ladies.”

Harvey, who has a younger brother Maxwell, six, is progressing well at school where he has special lighting for his reading and extra help from a speech therapist.

His mother said: “When they first meet him people can’t quite catch what he says, but his mates have known him since childhood so it is never a problem with them.”

Harvey’s favourite lesson is English and he enjoys writing.

Mrs Hole and her husband Steven, who have since separated, have set up the Möebius Research Trust with a Scottish family to campaign for greater awareness and study into the condition.

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The trust has a website at www.Möebiusresearchtrust.org and the families aim to raise £250,000 to fund research into the causes of the condition.

Mrs Hole said; “We have been really lucky for Harvey to have progressed so well.

“He has the main feature of the syndrome, facial paralysis with no lateral eye movement, but some other children are born with missing digits and club feet or more rarely with learning disabilities. It can even be fatal.

“There is an operation using muscle from other parts of the body which could allow him to smile, but we weren’t 100 per cent convinced it would work.

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“It is a decision Harvey will have to make when he gets older. Hopefully they will eventually find a cause and a cure for it.

“Technology is advancing all the time and any donations to the trust will be welcome.”

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