Mum of son with rare bulging eye condition is searching for a diagnosis

When little Kobi-Jai Morgan was born, he had a large hole in his heart, a floppy larynx and bruising around his eyes, which he couldn’t open. 

After his arrival in March 2022, he was immediately transferred to intensive care and put on ventilation and given a feeding tube. 

After six weeks in hospital, it was confirmed that Kobe’s eyes had not fully developed, leaving him blind.

The condition means his eyes bulge out and mum Morgan Nottingham, 24, can tell that he sometimes feels uncomfortable. 

‘He cannot carry on with his eyes like that,’ he said. 

‘There has to be someone out there that knows something,’

Although Morgan doesn’t know what caused his condition, she knows it means her son’s eyes are light-sensitive, causing him discomfort.

The tot sometimes scratches his eyes and pushes his eyelids up towards his eyebrows. 

Morgan gives Kobi, now one, four different types of eye drops every day, and he has specialist transparent glasses made by Cardiff University.

‘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,’ Morgan continued. 

‘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 it while he’s little but it’s really sad, bless him.’

Morgan is worried about how Kobe will feel about his eyes as he grows older. 

‘It’s just about Kobi now,’ she 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”.’

Now, Morgan is searching for answers about her son’s condition, having travelled to different parts of the UK unsuccessfully to see what she could find out.

Even trips to Great Ormond Street Hospital in London, private specialists and visits to other hospitals, have not seen Kobi diagnosed with anything specific. 

To make matters worse, there are also no blind support services near where she lives in Swansea, Wales.

‘I want answers,’ said Morgan.

‘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.’

Kobi’s family have started a fundraiser to allow them to take him to more specialists and finally get a diagnosis.

To donate, visit Kobi’s page on GoFundMe.

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