A little boy lives in agony and is unable to see but nobody knows how his condition developed, his desperate mum said.
Kobi-Jai Morgan was born prematurely in March 2022 after a difficult delivery at a hospital in Bridgend, Wales, and was then transferred to a neonatal intensive care unit, where he was put on ventilation and a feeding tube.
The baby boy had a large hole in his heart, a floppy larynx, and bruising around his eyes which were closed for some time, WalesOnline reports.
After being moved to Singleton Hospital where he spent six weeks, it soon became apparent that the form and structure of his eyes had not fully developed - but nobody could figure out why.
Kobi's mum Morgan, 24, said she is still searching for answers more than a year after her "most happy, crazy little boy" was born.
The woman said: "No one prepares you to be a parent but especially not a parent of a child with so many additional needs at the age of 22."
The boy, who is registered blind, has been through a lot since first coming into the world, his mum said.
Morgan explained: "Whatever life's thrown at him he's just powering through it. We've come to terms with the fact that he might not have his vision for life. But we get looks as it is.
"He has bulgy eyes and the bottom of his eyes scrape across his cheek. He doesn't realise while he's little but it's really sad, bless him."
The baby's condition means his eyes are light-sensitive and he spends a lot of time in discomfort.
Kobi scratches his eyes and sometimes tucks his eyelids up towards his eyebrows when they are bothering him.
His mother administers four differrent types of eye drops to Kobi's eyes every day and the family received specialist transparent glasses made by Cardiff University for him to wear to help with daily life.
Morgan, who has travelled the UK in the hope of finding out more about her son's health, said: "He cannot carry on with his eyes like that. There has to be someone out there that knows something."
As Kobi has got older he is now able to tell his mum when he feels uncomfortable and tests have shown he reacts to light and shadows.
The pair have been to Great Ormond Street Hospital in London, visited private specialists, and have been on countless other hospital trips but still do not have a diagnosis.
Kobi recently had open heart surgery in Bristol but the hole in his heart has opened up again slightly since.
"No one knows exactly what's going on," said Morgan, who desperately wants to help her little boy. Kobi's family have started a fundraiser and hope to raise enough money to take Kobi to more specialists and finally get a diagnosis. "It's just about Kobi now," she said.
On the future, Morgan said: "This is completely new to us. When he starts going to school – you know what kids are like. He has children coming up to him already and saying: 'Oh mammy he looks scary'. I want answers. I want more understanding to do more research and see what we can do to help him further and to bring more awareness.
"At the moment we have found no blind support centres, schools, or sensory classes locally. The closest specialist school is in Birmingham. We want to bring more awareness and help and support other parents going through the same thing. We're all learning."
You can donate to the fundraiser here.
