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Daily Record
Daily Record
National
John-Paul Clark

Heartbroken parents of little girl who pulls out her hair and eats it make brave decision to chop off her locks

A Scots toddler is suffering from a rare genetic condition that causes her to pull out her own hair and eat it.

Sydney Miller, 2, is believed to be the only person in Scotland to suffer from Primose Syndrome - a progressive genetic disorder that varies in symptoms.

The condition has seen the tot from Dunbar hospitalised multiple times in her short life.

Her heartbroken parents, Stuart, 47, and Stacie, 36, have bravely opened up on their daughter's traumatic behavioural changes that have led to her tearing out clumps of her hair before swallowing it.

Doctors believe the habit may have started due to sensory issues, as Sydney previously bit through a new dummy every day.

Sydney Miller, aged two, is set to have her hair chopped but will raise cash for charity (Stacie Miller)

Speaking to the Record, mum Stacie said: "It's been heartbreaking to watch her tear out her beautiful hair. She has such lovely long hair before this.

"Sydney has been in and out of hospital having treatment for two years now, but the hair pulling is a new behaviour.

"We are not exactly sure why she has started.

"She has a lot of sensory issues and doctors and therapists have suggested to us it might be because we had to remove her dummy from her a few months back.

"She was going through a dummy a day, just biting the teet off so we had to remove that, and since then it just started.

"At first it was just a couple of strands, then it was handfuls and it ended up with her whole pony tail.

"Now, she is eating it and that is causing big health concerns but she doesn't cry. It just doesn't seem to bother her and is always just a happy wee girl.

"She just seems to have no pain barrier but it is obviously really concerning health wise."

Now the couple have decided to cut their daughter's hair off, to give her some relief from the pulling and helmet, but also to raise some much needed money for charity after stumbling upon the story of young cancer sufferer Flora Gentleman.

Three-year-old Flora, from East Lothian, was diagnosed with neuro­blastoma in her stomach last year and her parents are trying to raise over £300k for specialist treatment in New York.

Stacie added: "This has been heartbreaking for our family and we have to do this for Sydney's sake, so she can forget about the pulling for a while, but we decided to try and do something for Flora too and and just ask people to help in whatever way they can.

Brave little Sydney is always happy and never lets life get her down (Stacie Miller)

"Even if it is just sharing the page and getting word out there about our fundraiser."

Stacie and dad Stuart first noticed an issue with Sydney’s eyes when she was four-weeks-old.

She was diagnosed with Primrose Syndrome at 10-months-old after an agonising wait for test results.

At the time, there were only 55 confirmed cases of the condition in the world.

Symptoms vary between each individual case but usually include ossification of the external ears, learning difficulties, and facial abnormalities.

Sydney faces a lifetime of care, with speech and physical therapy, and treatment for behaviour concerns but her mum and dad will be behind her every step of the way.

Her family have praised the support they receive for their young daughter as they 'take each day at a time'.

Stacie said: "Sydney has physio care, genetic doctors, eye and hearing doctors, metabolic nurses and dieticians who have all been absolutely fantastic.

"It has been a long journey, but we just take each day at a time and don’t get too far ahead of ourselves."

To donate to the fundraiser for Flora Gentleman click here.

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