Girl suffers from rare condition where one half of her body grows faster than the other

Lilli-Mai with her proud mum Becky

A little girl was diagnosed with a rare growth condition after her parents noticed the right-hand side of her body was growing quicker than the left.
Lilli-Mai Queen, five, suffers from Beckwith Wiedemann syndrome (BWS), often characterised by different parts of the body growing at different rates.
First diagnosed at 11 months old, Lilli-Mai’s right leg is now nearly 3cm longer than her left and she has an enlarged tongue on one side and larger right arm and hand.
She has also recently overtaken her big brother in height, though he is 13 months older.
Despite often falling over while playing and needing shoes in different sizes, it is believed Lilli-Mai will eventually grow out of the condition.

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Lilli-Mai being treated in hospital for her rare condition

Her mum Beckie Perry, 24, said: “I was so scared when Lilli-Mai was first diagnosed.
Read more: Beaming smile of little boy with cerebral palsy enjoying his first ever supermarket trip
"I’d never heard of BWS and I didn’t know when the growing would stop.
“It wasn’t obvious at all when she was newborn , but as Lilli-Mai got older her baby clothes never seemed to fit on one side.

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Little Lilli-Mai has specially adapted shoes

"I’d put her shoes on and only one shoe would fit her. Her right hand and arm are slightly fatter too.

“Having a bigger tongue on one side is one of the main symptoms. She could have had a tongue reduction but hers wasn’t too severe.
“Having said that, she never had a dummy as she couldn’t hold one in her mouth, and she struggled with a bottle so she went onto a cup at five months old.

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Mum Becky with Lilli-Mai and her other children

“She doesn’t understand what’s wrong with her, but she knows it messes with her co-ordination and she can tell the size difference when she is putting her shoes on and one doesn’t quite fit.
“It makes her upset sometimes. She leans on her left side because the leg is shorter and gets a lot of pain in her back and legs.

"She falls over a lot too because of the difference in the length of her legs.

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Lilli-Mai often falls because her legs are different lengths

“Her right leg is now 2.5cm longer but it’s increasing all the time. The overgrowth is meant to even itself out eventually, but I think Lilli-Mai’s is getting worse.”
As a newborn baby, Beckie realised Lilli-Mai’s tongue often stuck out, leaving her struggling to feed from a bottle.
At her eight-week check-up she asked what it could be and was referred to a paediatric specialist , eventually leading to Lilli-Mai’s diagnosis.

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As a child Lilli-Mai constantly stuck her tongue out

Beckie was horrified to learn that the condition also increased her daughter’s risk of childhood cancer, so Lilli-Mai must undergo a scan every 12 weeks to detect any cancer cells as early as possible.
The condition is believed to affect around one in 15,000 births and Lilli-Mai’s siblings Ryleigh Queen, six, and Willow Queen, three, do not display any of the symptoms.
Lilli-Mai, from Blackburn, Lancs, who started mainstream school last September, also suffers from night terrors, absence seizures and mild facial weakness.

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Lilli-Mai's right side of her tongue is longer than the left

Beckie said: “Lilli-Mai has caught up to Ryleigh in height now, even though he’s a year older. She’s bigger than most of her school friends.

“She has special shoes made by the hospital, with an insole for the smaller foot. They give her a shoe raise under the heel to keep her balanced.
"The shoes take a long time to make, so if she needs a new pair I’ve often just gone and bought some in a shop in two different sizes.
“She suffered a seizure in March last year whilst at nursery. When I got there, her eyes were rolling and she was lay on a beanbag.

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Lilli-Mai with her specially made shoes which make her body level

“It was as though she’d fallen asleep and they couldn’t wake her up. It was so scary. She is still having tests now to find out what it was.
“Since then, the muscles in her tongue have gone quite lazy so her speech is a lot worse.
"Previously it was just sticking out a bit, but her speech was still quite clear. Now she makes a slight hissing sound.

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(Lilli-Mai with mum Becky and siblings Willow and Ryleigh

“The consultant said her body had gone through something similar to a mini stroke.
"Since then, her walking and balance have gotten worse, as well as the pain in her legs.
“Our local pub recently fundraised so that we can go on holiday to Spain in September.

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Lilli-Mai has even suffered a mini stroke

"Lilli-Mai is so excited. It will give her the chance to have fun and forget about all the hospital appointments.
“We try not to treat her any differently at home and she gets involved in sports at school, but if she feels tired she tells the teacher and can sit out.
"She doesn’t seem to mind, she’s a really strong little girl in that way.”