A woman who was abandoned by her mother as a baby as a result of her rare genetic condition has revealed how her son suffered a brain injury 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 talk about UK Carers Week, which kicked off yesterday.

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

He explained, “They wouldn’t use this word now, but [doctors told] They told my mother that she was going to be severely raped.

“So I think as a 22-year-old from The Gambia, it was too much for her, so she abandoned 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 extremities and occurs in one in every 65,000 to 88,000 births.

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

She explained: ‘I grew up in children’s homes with children with other learning difficulties up to the age of nine, but they soon found out that mentally I was quite well.

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

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

She said: “When you’re raised in a residence, despite having clothes on your back, food in your belly and a roof over your head, you don’t get the love and security that you would normally get if you were raised in a family unit.

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

Kaddy Thomas, who revealed her son was left brain damaged after routine surgery at 18 months old, highlighted the vital work of unpaid carers.

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

But when she was 18 months old, she tragically suffered brain damage during a routine operation where 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 child who would crawl, eat and go to daycare, dance to music to a child who then froze, I didn’t recognize him.

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

She said: “You can plan to go to the zoo, to the park, and then all of a sudden you could have an epileptic seizure that completely changes the dynamic of how our day is going to unfold.”

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

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

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

At the age of one year, 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) in a specific gene.

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

As we age, the sutures gradually fuse (glue), usually after all head growth has finished.

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

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

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

NHS source

Kaddy now supports other caregivers to give them the support and confidence they need to keep going.

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

Carers Week is an annual campaign to raise awareness about caregiving, 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 caregiving responsibilities to identify themselves as carers and access much-needed support.

A caregiver is anyone who cares for a family member or friend who has a disability, a mental or physical illness, an addiction, or who needs extra help as they age.

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Source: tit.edu.vn