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Daily Mirror
Daily Mirror
National
Vivienne Aitken

Girl born with 12 fingers and toes due to rare genetic condition

A little girl born with 12 fingers and 12 toes will go blind by the time she is a teenager because of a rare genetic condition.

Caitlin Wilkie, four, was born with six fingers on each hand and six toes on each foot.

Mum Ashley, 40, told the Daily Record: “I had a completely normal pregnancy.

“I noticed I had a little girl and that she had six fingers on each hand and six toes on each foot.

“But after a 30-hour-labour, I was exhausted and thought I can’t deal with this just now.

“The next day we got into the mindset there was something wrong and the genetic team got involved from an early stage.

“But they couldn’t find anything. They couldn’t find a reason to why she was born with extra digits.

“We were sent home with our baby and just got on with life.”

Initially, doctors couldn’t find a reason as to why she was born with extra digits (DailyRecord/ WS)

Caitlin, of Kirriemuir, Angus, had numerous hospital check-ups and underwent two five-hour operations to remove her extra fingers and toes.

But when she was just 18 months old, Ashley and husband Liam, 36, contacted the health visitor because they felt Caitlin wasn’t meeting her milestones. She wasn’t walking and she had very little speech.

Vetinary nurse Ashley said: “Alarm bells started ringing and the genetic team got back involved. They sent some samples to Great Ormond Street Hospital in London and in March 2017, they diagnosed Bardet-Biedl Syndrome.”

The condition causes sight loss and most children are registered blind in teenage years. They also struggle with obesity as their brain never realises they are full.

Patients can also have kidney and heart problems as well as being at risk of diabetes, strokes and heart attacks because of the obesity.

There are around 600 people with the condition in the UK and it occurs when both parents have the same BBS gene – a one in 260,000 chance.

However, most can live normal lives and therapists have helped Caitlin walk and talk. She should eventually catch up with her peers.

Ashley went on: “I was just seven weeks pregnant with our second child when Caitlin was diagnosed and we learned we had a one in four chance of Niamh, who is now 21 months, having it too.”

A prenatal test to determine chromosomal or genetic disorders was carried out and proved Niamh was in the clear.

The family has raised £80,000 for charity Bardet-Biedl UK to help fund research into delaying sight loss.

Ashley said: “It could really benefit Caitlin and those who come after her. We wanted to tell Caitlin’s story to raise awareness of the condition during Jeans for Genes Day.”

The annual event by Genetic Disorders UK will run from September 16-21 and raises money for the care of children affected by genetic disorders.

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