A BRAVE Greenock schoolgirl is one of few people in the world battling a rare genetic disease.

Little Eilidh Birney was has Kabuki syndrome — which means she has to cope with a string of serious and complex medical conditions.

The six-year-old has poor muscle tone, delayed development, a heart murmur and learning difficulties.

She is also more prone to other medical problems but one of the biggest worries for her parents is the fact that so little is known about her condition, even amongst the medical profession.

Her dad George, 34, said: “We don’t what the future holds for Eilidh, if she’s going to have heart or kidney issues when she gets older.

“It’s not life-limiting as far as we know but not much is known about it.”

Kabuki syndrome is believed to affect only 1 in 32,000 people worldwide and was named by Japanese doctors who thought the children’s facial features looked similar to actors in Kabuki theatre.

Eilidh, a pupil at Craigmarloch School, lives with her dad, mum Anne and sister Lynsey, in Alpine Grove in the east end.

She was born with a cleft palate, which meant she had a hole in the roof of her mouth and whenever was she fed milk it kept coming out of her nose.

This was only discovered when she was six months old because a layer of skin had covered the gap.

Anne, 37, explained: “Eilidh was lying in her cot and turned blue and floppy.

“She wasn’t moving and was struggling to breathe.

“She was rushed to Inverclyde Royal and then to the Royal Alexandra in Paisley — it turned out the milk had clogged and was affecting her breathing.

“That’s when the doctors diagnosed the cleft palate.”

Eilidh underwent corrective surgery at Yorkhill Hospital three months later and had gromets fitted to help her hearing, which had also been affected.

It was during one of the cleft palate check-ups that a geneticist diagnosed Kabuki syndrome.

George added: “She took blood tests to confirm it then it was all about trying to get information about it.

“We found the Kabuki UK website and through it we’ve met families all over the world whose children have the condition.

“It’s like a support network.

“The charity holds a fun day every year and we’re going down this year — it gives you a chance to speak to other families.”

Anne admits looking after Eilidh can be very difficult at times, as she also has autism and communication issues which means she repeats everything people say.

Anne said: “She is a whirlwind all the time. She has communication issues and we use a sign language programme.

“It can be frustrating for her and her anger comes out — it can be very stressful.

“We just take every day as it comes.

“Every day is completely different with Eilidh — you don’t know what each new day will bring.”

The family recently received an unexpected boost when friend, local boxer and personal trainer Natalie McKay, inset, from Victoria Boxing Club, decided to fundraise to help Eilidh.

Anne said: “I knew Natalie from where she worked before and she said she wanted to do something for charity and asked if I minded if it was for Eilidh.

“I was completely overwhelmed — she is an absolute star who goes above and beyond to help people.

“She’s such a genuine person.”

Last Saturday Natalie took a busload of 50 people — including George and Anne — to climb Ben Nevis and they raised £1,000.

Anne, who has been referred to a rheumatology clinic, managed to complete the trek but not without a great deal of pain and tears.

She said: “My family didn’t want to me to do it because of my arthritis. I can’t walk down stairs and have to bump down but I felt that people were doing this for Eilidh and helping us out, so we wanted to do it with them.

“I cried four times during the walk and felt that I couldn’t go on because I was sore, but I did it.”

The family say the money raised from the challenge organised by Natalie will help to make life easier for her.

They intend to use it to buy a specially-adapted car seat to make car journeys more comfortable for Eilidh, plus toys and equipment.

They will also make a contribution to Kabuki UK.

Anne said: “I cannot believe people’s generosity.

“I knew we would raise some money but I didn’t expect that amount at all.

“It’s given us a tremendous boost that all these people have supported us.

“It’s going to make it easier to take Eilidh out and about and we know that she’s going to be safe with this special five point car seat.

“She has no sense of danger, so now I can drive without stopping all the time to make sure she is strapped in.

“It will make such a big difference, knowing she is safe and happy in the car.

“We want to thank everyone so much for their support.”