A little girl was nicknamed the ‘invisible baby’ due to her very rare condition. Ocean-Rae Lewis was born with an illness that caused her bones to disintegrate in her body.
Before she was diagnosed, medics feared that her family was causing her home and police and the social services got involved. But tests and an X-ray soon revealed the heartbreaking truth.
Images showed her ribs and spine were completely gone. Ocean-Rae was the only person in the world to be diagnosed with the condition but tragically she did not survive and passed away shortly after her first birthday.
Speaking to The Mirror, her mum Alice Lewis 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 realised that the fractures 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.
(Image: Alice Lewis)
Both parents 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.”
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.
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.
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