22 October 2023 , 15:07
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A baby was born with such a rare condition that her bones disintegrated in her body - with medics at first fearing her parents had caused her harm. She became dubbed the 'invisible' child.
The family endured a nightmare when social services and the police were called in, until tests on little Ocean-Rae Lewis put them in the clear - but revealed the devastating reality for the infant. X-ray images of little Ocean-Rae's body showed her ribs and spine completely gone - leaving just her partially formed lungs.
The youngster was diagnosed as the only person in the world with a rare genetic condition which caused the disintegration in her bones, with her family describing her X-rays as her looking like the invisible man. Tiny Ocean-Rae would continue to battle on, but tragically she died days after her first birthday, having spent just 17 days of her young life outside the intensive care unit.
An x-ray shows her bones starting to disappear (Alice Lewis)
Ocean-Rae with mum Alice (Alice Lewis)Ocean-Rae's family want to highlight her brave struggle, the condition she suffered from and to seek help in arranging her funeral. Her mum Alice, 18, told how she rushed her baby, who had been born with three breaks in both her arms, to hospital when she suffered a bleed on the brain. She recalled her shock at how she was left feeling like a criminal.
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."
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Doctors soon realised that the fractures throughout Ocean-Rae's body were old, meaning they occurred while she was in the womb and a blood test revealed that she had a mutated version of Hypophosphatasia. The rare genetic disorder is usually characterised when bones and teeth have impaired mineralisation, which means they can't take up calcium and phosphorus required for proper hardness and strength.
Unfortunately for Ocean-Rae, both her mother and father were carriers and a mutated gene saw her have a unique type of Hypophosphatasia, which doctors around the world were unable to treat. Her bones were unable to protect her organs but her family say she miraculously was still able to move her arms.
Ocean-Rae's nan Jay McGinley-James and her partner were with Alice when the investigation was carried out. She 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."
Mum Alice and nan Jay in hospital (Alice Lewis)
Her family said goodbye to little Ocean-Rae (Alice Lewis)Alice from Pontypridd said her daughter loved to watch Disney movies on her tablet with Tangled and Finding Nemo her favourites. She 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.
"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."
Ocean-Rae on her first birthday (Alice Lewis)
She was a Disney fan (Alice Lewis)Little Ocean-Rae made it to her first birthday and had a visit from Mickey Mouse and her family brought in some sand to bring the beach to her as as she had never got the chance to go to a real one. The infant died in her mother's arms as her nan read Bringing Down the Moon to her on Friday, October 13.
Her family is now fundraising to give the tot a funeral fit for a princess, with a horse drawn carriage; you can donate here