Sydney Miller, 2, is described by her mum as just like a newborn baby due to her Primrose syndrome (Picture: SWNS)

A toddler with a genetic condition so rare that only two other children in the UK have been diagnosed with it is having her hair shaved off for her own safety.

Two-year-old Sydney Miller is described by her mum as just like a newborn baby due to Primrose syndrome, which affects only 50 children around the world.

Mum-of-five Stacie, 36, said her daughter showed no signs of being any different from other babies when she was born on March 18, 2020, just before the first lockdown.

The first sign something was up was when Sydney could not open one of her eyes, prompting fears she may have been born without an eyeball.

She was diagnosed with Horner syndrome, where one eye is blue and one is brown, which is an indicator of an underlying condition, sparking a string of appointments as medics tried to work out what was wrong.

A doctor who treated Sydney had been to a seminar on Primrose syndrome, which is so rare that even healthcare professionals have to read about it on Google.

Sydney may never be able to talk, and her hair is falling out in clumps (Picture: Katielee Arrowsmith/SWNS)

Sydney is now starting to attend an additional needs nursery, where she has an occupational therapist on site (Picture: Katielee Arrowsmith/SWNS)

Sydney is currently non-verbal and her parents do not know if she will ever talk.

She cannot crawl or pull herself up, so Stacie has to carry her around, but the youngster only weighs 20lbs – as much as a typical six-month-old baby.

Stacie and husband Stuart, 47, are self-employed and run a wedding car business in Dunbar, East Lothian.

Sydney is now starting to attend an additional needs nursery, where she has an occupational therapist on site.

Stacie, from Prestonpans, said the family are unsure what the future holds due to the rarity of the illness.

She said: ‘It is very very rare, there are only 50 children with it worldwide.’

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The couple have also realised Sydney’s hair was posing a danger to her.

Her mum began to notice Sydney was pulling strands of hair from her scalp, which later came out in clumps.

She then began chewing it.

Her hair will be shaved off on Friday to stop the risk of choking, amid hopes she will grow out of the desire to pull it out.

However, Stacie also stressed the family include Sydney in all their activities, and plan to take her to Turkey on holiday in July.

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