A woman who was abandoned by her mother as a baby due to her rare genetic condition has revealed how her son was 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 kicked off yesterday.

The full-time caregiver was born with a rare condition called Apert syndrome in 1968. In Kaddy’s early days, doctors warned her mother that she would never live a normal life.

He explained: ‘They wouldn’t use that word now but [doctors told] my mother was told i would be severely r *******.

“So I think as a 22-year-old from Gambia, it was too much for her to handle, so she walked out on me.”

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

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

In the years that followed, Kaddy lived in a number of foster homes in the UK for children with special needs.

She explained: ‘I grew up in orphanages with children with other learning disabilities up until the age of nine, but they soon found that I was quite well mentally.

“So I moved into the care of Birmingham Children’s Social Services and was due to be adopted but the situation fell through so I was fostered for a couple of years and then went back into foster care.”

Kaddy had a volatile adolescence, but says being encouraged to care for others in her local community has changed her life.

She said: ‘When you’re raised in a residential facility, despite having clothes on your back, food in your belly and a roof over your head, you don’t get the love and security you normally would if you grew up in a household.’

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

Kaddy Thomas, who revealed her son suffered brain damage after routine surgery at 18 months, highlighted the vital work of unpaid carers

Kaddy Thomas, who revealed her son suffered brain damage after routine surgery at 18 months, highlighted the vital work of unpaid carers

Kaddy, who has dedicated her life to caring for her son Elijah (pictured), discussed why she wants carers to feel supported as part of Carers Week

Kaddy, who has dedicated her life to caring for her son Elijah (pictured), discussed why she wants carers to feel supported as part of Carers Week

But when she was 18 months old, she tragically suffered brain damage during a routine operation in which surgeons discovered she had an undiagnosed infection, meaning she now needs constant care.

Explaining how his ‘life was turned upside down’, Kaddy said: ‘He went from a little boy who crawled, ate and went to kindergarten, danced to music to a little boy who then went still, I didn’t recognize him “.

Kaddy has said since that day “no two days are the same” and her life and his have changed forever.

She said, “You can plan to go to the zoo, the park, and then suddenly he might have a seizure that completely changes the dynamic of how our day is going to play out.”

“And depending on what happens with that attack, it will depend on whether or not we go to the hospital.

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

His son Elijah was also born with the condition in 2016, but things got more difficult when at 18 months he suffered brain damage after a routine operation meaning he now needs round the clock care.

His son Elijah was also born with the condition in 2016, but things got more difficult when at 18 months he suffered brain damage after a routine operation meaning he now needs round the clock care.

At the age of one, she was abandoned by her mother because she was born with Apert syndrome

At the age of one, she was abandoned by her mother because she was born with Apert syndrome

What is Apert Syndrome?

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

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

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

When a baby has craniosynostosis, the sutures fuse before birth. It can affect one or more sutures.

Because children with Apert syndrome have a characteristic appearance, specific diagnostic tests are not needed.

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

SSN source

Kaddy now supports other carers to give them the support and confidence they need to move forward.

It wants to highlight the work done by the 5.7 million unpaid carers in the UK.

Carers Week is an annual campaign to raise awareness of care, highlight the challenges unpaid carers face and recognize the contribution they make to families and communities across the UK.

It also helps people who don’t think they have caring responsibilities to identify themselves as carers and access much-needed support.

A carer is anyone who cares for a family member or friend who has a disability, mental or physical illness, addiction, or who needs additional help as they get older.

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