Just one day before little Katie Martin was born her parents were told she would not survive childbirth.

Following a trouble-free pregnancy, her mother, Sue, started going into labour on May 5, 2010 – seven weeks before her due date.

After scans revealed an abnormal amount of fluid in the womb, doctors believed the baby could be anaemic.

But that was ruled out after she was taken to King’s College Hospital in London by ambulance for a blood transfusion.

“They told us they didn’t know what was wrong but that it was probably a genetic or chromosome abnormality, in which case the baby wouldn’t survive birth,” she recalled.

Katie - now a pupil at Reculver primary school in Herne Bay - was born the next day at Medway Maritime Hospital and remained in the infirmary’s special care unit for the following three months.

During her stay, she was diagnosed with Kabuki syndrome – a rare disorder that affects about one in 32,000 people.

The condition is characterised by a range of irregularities, including distinctive facial features, growth delays, varying degrees of intellectual disability and skeletal abnormalities.

In Katie’s case, it has meant that she has battled heart and kidney issues since birth.

“She spent 18 months like a newborn – lying on her back and not reacting – and was in and out of hospital,” Sue, 52, continued.

“She has aortic stenosis, so she had open-heart surgery when she was about eight weeks old.

“That didn’t work, though, so she had another procedure when she was six weeks old, which also didn’t work.

“Just after she turned four, she had an eight-hour valve replacement operation at the Royal Brompton Hospital.

“It has been successful, but she’ll need it done again because she had a donor valve which won’t grow with her.”

Sue, from Beltinge, says the transplant was the point at which Katie’s condition started to improve.

The nine-year-old has reduced the number of meals fed to her through a tube and is enjoying her studies at Reculver Primary School.

“It was like she had new batteries fitted when she had her heart valve replaced,” Sue added. “You couldn’t tell how poorly she was until she felt better because that was how she’d always been.

'It’s a rare syndrome and so few people have heard of it – doctors haven’t even heard of it unless they’ve come across somebody with it' - Sue Martin

“She’s very happy and is a bundle of energy, but she still tires. Because she has so many other medical issues we have to monitor her.

“I don’t think she actually knows she’s very different to anyone else.”

For Jeans for Genes Day, which comes to an today, the Martins are hoping to raise awareness of the support the charity Kabuki UK gives to others is similar circumstances.

Sue said: “It’s a rare syndrome and so few people have heard of it – doctors haven’t even heard of it unless they’ve come across somebody with it.”

For more information about Kabuki UK click here.

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