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A mother of a baby with an incredibly rare disorder, which means he cannot move his arms and legs, is desperately trying to find experts on the condition.
Lucinda Andrews, 32, gave birth to little Leo on March 7 at Medway Maritime Hospital and was unaware anything was wrong.
The Chatham resident - who had lived in Canada for five years before moving back to Kent this year - was told it could just be shock that meant her baby could not move.
But after six hours, his condition had not improved so he was transferred to intensive care before being taken to St Thomas' Hospital in London on March 11.
After running tests, medics discovered Leo has an extremely rare genetic disorder which affects the TBCD gene.
Only 16 people in the world have been officially diagnosed with the condition since 2016.
"I can’t fault anything St Thomas’ has done but because of Leo’s diagnosis, they don’t think there is anything they can do," she said.
"On record, he’s now the 16th person in the world since 2016 because there isn't genetic testing out there and is not as widely offered in England.
"I think there are probably more babies out there that haven’t been diagnosed.
"I can’t accept there is nothing [that can be done] and there has to be someone out there who has more knowledge on this."
Ms Andrews sent about 800 emails to medical experts across the world in a desperate bid to find someone who could help.
She managed to find an Italian doctor who was part of the discovery of the gene, a group of researchers in Japan and a doctor in North Carolina who treated a little girl with the condition.
The American medic recommended a drug for Leo to be put on for the incurable condition, which affects his brain, nervous system and muscles.
"He has made some improvements," she added. "When he was born, he was completely floppy, had no muscle strength and couldn’t move at all.
"If you picked his arm up, it would just drop on the bed. His wrists were completely floppy and he couldn’t move his fingers or close his hands.
"But since being on that medication he can move his arms around now himself. Not to the extent of normal movement but it’s a hell of a lot better than what he was doing."
Leo finally left intensive care on Thursday after spending three months in the London hospital.
As just 16 people have been officially diagnosed across the world, life expectancies and its severity varies.
Ms Andrews is seeking experts on the disorder to come forward in a bid to improve Leo's condition.
The mum-of-one had to fly back to the UK while she was 32 weeks pregnant after her partner and father of her baby left her - forcing her to sacrifice her dream of gaining a permanent residency in Canada.
She is now living with her parents in Chatham, who she said have been incredibly supportive.
