A little girl is believed to have been only one in the world born with an incredibly rare condition that causes her bones to disintegrate inside her.
Ocean-Rae Lewis was dubbed the “invisible child”. Her condition was brought to medics' attention when police and social services feared her parents were harming her.
While Ocean-Rae’s test results cleared the family of any wrongdoing, it was a devastating blow for the little one. X-ray images showed the child's ribs and spine had vanished.
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Her family described her X-rays as making her look like an invisible man. All she had left was a partially formed lung.
Ocean-Rae is currently the only person in the world known to have the rare genetic condition. The brave little girl sadly passed away only days after her first birthday.
Ocean-Rae spent only 17 days outside of the intensive care unit. Mum Alice, 18, recalls how her baby was born with three broken bones in both arms.
The young mum also had to rush Ocean to the hospital with a brain bleed. But was made to feel like a criminal during the incident.
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Speaking to The Mirror, Alice said: "She had three broken bones in each arm, it was really scary. No one could have loved that baby as much as I loved Ocean-Rae and for them to say I'd hurt her was awful."
Doctors soon discovered that the fractures throughout Ocean-Rae's body were old, indicating they occurred while she was still in the womb. A blood test revealed that she had a mutated version of Hypophosphatasia, a rare genetic disorder that affects the mineralisation of bones and teeth.
Both Alice and her partner were carriers of the condition, meaning Ocean sadly developed a unique type of condition that doctors were unable to treat. Despite her bones being unable to protect her organs, her family says she miraculously managed to move her arms.
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Ocean-Rae's grandmother, Jay McGinley-James, who was with Alice during the investigation, said: "The three of us were just looking at each other in shock, it was only a few hours and you can understand why they had to check no one was hurting her, but it was so terrifying. The doctors came in and explained her bones were broken, but they were old breaks so happened in the womb."
"Her bones were just disintegrating, normally on an X-ray the bones are white but they just weren't there, you could see straight through her. It was like she was the invisible man."
Alice from Pontypridd said: "She was such a happy baby, smiling, laughing, she'd be shaking her head, which was amazing when we saw the X-ray and we couldn't even see her spine. On one of her X-rays, you could see her arms were bigger than the bones left inside. By the last ones we could see right through her back."
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"A week before her birthday we were told she needed surgery as her digestive system had been twisted, but they said she couldn't have it as she'd probably die on the table and wouldn't make it through the surgery. They said she was dying and said she had days rather than weeks left."
Little Ocean-Rae celebrated her first birthday with a visit from Mickey Mouse and a makeshift beach in the hospital, as she never got to visit a real one. The little girl passed away in her mum's arms while her nan read Bringing Down the Moon to her on Friday, October 13.
The family is now raising funds for a princess-themed funeral complete with a horse-drawn carriage; donations can be made here.
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