Woman who was abandoned by her mother over her rare genetic condition shares heartbreak after son became brain damaged at 18 months old

A woman who was abandoned by her mother as a baby as a result of her rare genetic condition has revealed how her son became brain damaged in a tragic twist of fate when he was just 18 months old.

Kaddy Thomas, from Clevedon, North Somerset, who has dedicated her life to caring for her son Elijah, appeared on This Morning today to discuss Carers Week in the UK – which began yesterday.

The full-time carer was born with a rare condition called Apert Syndrome in 1968. In the first few days of Kaddy’s life, doctors warned her mother that she would never live a normal life.

She explained: ‘They wouldn’t use this word now but [doctors told] my mother was told I was going to be severely r*******.

‘So I think as a 22-year-old from Gambia, it was too much for her to handle so she abandoned me.’

Apert syndrome, also known as acrocephalosyndactyly, is a genetic disorder that causes fusion of the skull, hands, and feet bones.

It is characterised by deformities of the skull, face, teeth, and limbs and it occurs in one out of every 65,000 to 88,000 births.

In the years that followed, Kaddy lived in numerous foster homes around the UK for children with special needs.

She explained: ‘I grew up in children’s homes with children with other learning difficulties up until the age of nine but soon they discovered that mentally I was fairly well.

‘So I moved under the care of Birmingham children’s social services and was due to be adopted but that fell through so I was fostered for a couple of years and then I went back into care.’

Kaddy had some volatile teenage years but she says being encouraged to care for others in her local community turned her life around.

She said: ‘When you are brought up in residential care, despite having clothes on your back, food in your belly and a roof over your head you don’t get that love and security that you would ordinarily get if you were brought up in a family unit.’

In 2016, Kaddy welcomed her son Elijah – who was born with the same condition.

But when he was 18 months old, he tragically suffered brain damage during a routine operation where surgeons found he had an undiagnosed infection – meaning he now needs constant care.

Explaining how her ‘life was turned upside down’, Kaddy said: ‘He went from a young boy who was crawling, eating an going to nursery, dance to music to a child who then became motionless, I didn’t recognise him.’

Kaddy said since that that day ‘no two days are the same’ and her life and his changed forever.

She said: ‘You can plan to go to the zoo, the park, and then suddenly he might have an epileptic seizure which completely changes the dynamic of how our day is going to pan out.

‘And depending on what happens with that seizure, it would depend on whether we would go into the hospital or not.

‘He is in Bristol Children’s Hospital as we speak today and Sunday night and today he had various seizures that required emergency medication. But you know he is strong, determined and resilient, a bit like me actually.

Apert syndrome is a genetic condition, caused by a mutation (change) on a specific gene.

The gene mutation can be passed on from parent to child but in many cases develops sporadically.

As we grow older, the sutures gradually fuse (stick) together, usually after all head growth has finished.

When a child has craniosynostosis, the sutures fuse before birth. It can affect one suture or several.

As children with Apert syndrome have a characteristic appearance, no specific diagnostic tests are needed.

Depending on the severity of the skull fusion, treatment soon after birth may be needed if pressure inside the head is raised, breathing problems are severe or there is a risk of eye damage.

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