Her mum Beckie Perry, 24, said: “I was so scared when Lilli-Mai was first diagnosed. 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.
"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.
“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.
“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.”
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.
Source: http://www.kevindjakporblog.com
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