The mother of a seriously ill girl has been left outraged after Facebook banned a picture of her daughter being fed by a tube.
Shai Winn, nine, was born prematurely at 31 weeks and is unable to drink water, go swimming or eat by herself.
She suffers from a laryngeal cleft, a connection between her larynx (voice box) and her oesophagus (food pipe), which means food or fluid can pass into her airway.
Her mother Lindsey Bidwill, 40, started charity to raise awareness about her condition but was left stunned when images of her daughter were taken down online.
She says that Facebook told her the picture of Shai smiling with a food tube was too ‘shocking, sensational or excessively violent’.
‘I was just shocked. Even if it was a robot it is just not on,’ she said.
‘Some of the stuff on Facebook is absolutely shocking so I couldn’t believe they didn’t let me post a picture of my daughter.’
The mum-of-four added: ‘I never told Shai it happened, she would have been really upset.’
Lindsey immediately appealed the decision which was then rectified about 10 minutes later.
Shai’s condition is so unique that doctors have put her forward for genetic testing.
Along with her laryngeal cleft she has aspiration pneumonia, which means she inhales food, stomach acid or saliva into the lungs.
She also suffers with oesophageal dysmobility, a spasm-type pain when swallowing and gastroparesis, stomach paralysis.
The schoolgirl spends 17 hours a day hooked up to a machine that feeds her and can’t drink water or go swimming, with even brushing her teeth holding the potential to be fatal.
Shai also can’t go out with her friends during lunchtime at school and has to spend her time playing inside on a laptop.
‘She’s been really down lately. She’s got one friend called Finley who also gets fed by a tube and they’re really a lifeline for each other,’ Lindsey said.
‘She said “Mummy I only feel normal when I’m with Finley”.’
Shai is having a surgery later this year to try and fix her laryngeal cleft, but will still need to be fed by a tube even if the risky operation proves successful.
As a result of her prolonged health conditions, Lindsey says her daughter has missed over 12 weeks of school in less 18 months.
Shai’s Smile has raised £20,000 so far, some of which will go towards a party for other ‘tubies’, Lindsey says.
She described the ‘tubie world’ as a lonely one and wants to create a space which doesn’t revolve around food where the children can connect.
A spokesperson for Facebook told Metro: ‘Shai’s picture was reinstated within less than ten minutes of Ms Bidwill reporting it to us.
‘We know how important is it for families like Shai’s to raise awareness of causes that are close to their hearts on Facebook and we wish Shai and her family all the very best with their fundraising efforts.’
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