This baby's adorable tongue-out expression is actually a sign of something far more serious...

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Ocea Varney Beckwith-Wiedemann Syndrome
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The parents of a little girl whose tongue is always sticking out are trying to raising awareness of her rare condition.


Her tongue-out expression may look like a cute mannerism but in fact it's a sign of something far more serious.


18-month-old Ocea Varney, suffers from Beckwith-Wiedemann Syndrome (BWS); a congenital overgrowth disorder where infants are born larger than normal, meaning her tongue couldn't fit in her mouth. 


Ocea's condition means her tongue is too big to fit in her mouth

Image: Facebook/Melanie L Varney


28-year-old mum Melanie Varney, from Canada, is desperately trying to raise awareness of her daughter's rare condition - which affects around 1 in every 14,000 babies in the US - after doctors failed to diagnose her. 


She said she first noticed the problem before Ocea was even born, 'You could even see Ocea's tongue sticking out on the ultrasound.

'When she was born it was the first thing I noticed - I thought it was cute at first, but it caused some serious complications.'


Ocea, who has a twin sister, Indigo, and older brother, Joey, had to undergo tongue corrective surgery in Missouri at just seven months old, to avoid the breathing, choking, and feeding difficulties that BWS can cause.


Without the surgery, BWS sufferers can experience serious orthodontic concerns due to the jaw and face shape changing to accomodate the enlarged tongue.


 Ocea was born much larger than her twin sister, Indigo


Image: Facebook/Melanie L Varney


She also has to revist the hospital every six weeks to be screened for tumours, as she has a greatly increased risk of childhood cancer, particularly liver and kidney tumors.


Mum Melanie said, 'The moment I gave birth to Ocea I thought she looked different to my other kids.

'Obviously she had her tongue sticking out, but she was bigger than her sister.

'When we were out at the store we would get comments about her tongue poking out - most of them said she was cute but others thought she was being rude.

'She was miserable with it - I would try and breastfeed her but she just couldn't latch on.

'It kept me up all night either trying or worrying.'


Melanie is campaigning for increased awareness of BWS, after doctors failed to diagnose Ocea.


Image: Facebook/Melanie L Varney


After months of Melanie and her husband Gabby being told Ocea's tongue was probably just a phase, they decided to take action.


After doing some online research they came across a little girl with a similar story to Ocea and decided to contact a Beckwith-Wiedemann Syndrome specialist, who instantly diagnosed her with the condition.


'It was heartbreaking to hear she had the condition.

'But after three months, at least we finally had a diagnosis and could start doing something about it.'


Shortly after the diagnosis, Melanie and her friend Tricia Surles - whose two year old also suffers from the rare condition - decided to set up a website, How Big BWS, to raise awareness of the signs and symptoms of the condition.


The 28th August marks a 'How Big is Yours' day, a social media campaign they've organised to raise awareness of the condition by asking people to post tongue-out selfies using the hashtag #howbigbws.


Watch Ocea's story


Melanie said, 'Our goal is to raise awareness about this syndrome.

'Up to a quarter of sufferers develop cancer so it's important that an early diagnosis is made.

'We want doctors to recognise BWS and ensure families know there is a support network out there for them.

'If that means getting people to pull a silly face then that's worth it.'


Had you ever heard of Beckwith-Wiedemann Syndrome before? What do you make to Ocea's story? Let us know by commenting below.

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