The parents of the first baby in the UK to survive being born with her heart on the outside of her body have been told she is going blind.
Naomi Findlay, 35, and Dean Wilkins, 47, were given the devastating news by doctors treating their daughter Vanellope Hope Wilkins.
The three-year-old is already partially-sighted and is expected to be completely blind by the time she is seven.
Doctors spotted she was suffering from ectopia cordis when mum Naomi, of Bulwell, Notts, went for her nine-week scan.
The ultra-rare condition is caused when the breast bone fails to develop normally in a foetus.
As a result the heart and part of the stomach grew on the outside of Vanellope’s tiny developing body.
The condition is so rare medics treating Vanellope had to use Google to get information on it.
They discovered it proves fatal in 90% of cases and urged Naomi and Dean to opt for a termination.
But the couple refused to give up on their little fighter and spent the next eight months praying she would survive in the womb.
Incredibly Vanellope pulled through and was born five weeks early in December 2017 by caesarean section.
Surgeons were hopeful she would go on to lead a normal and healthy life.
But now mum-of-four Naomi has revealed her daughter has epilepsy, autism and is losing her eyesight.
She said: “She is registered partially sighted but I have been told by the time she is seven, she will be completely blind.
“It is devastating to know what day she won’t be able to see my face.
“She is also potentially mute because of the autism.
“I do feel like it’s been one thing after another, but she is just so resilient and so happy.
“She has such a character and she always has a smile.”
Naomi is now fundraising for new sensory equipment to help Vanellope, who needs 24-hour care.
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“I want to keep her happy and give her time to thrive because she just makes me so proud,” she said.
“We take every day as it comes, because we never know how long we’re going to have.”