Toddler is having hair shaved off for her own safety after being diagnosed with Primrose condition

2 years ago
28

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

Sydney Miller, aged two-and-a-half, is described by her mum as just like a newborn baby due to Primrose Syndrome, which impacts only 50 children around the world.

Mum-of-five Stacie Miller, 36, said the tot 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 that something was up was that 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 - which sparked 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 is non-verbal and her parents do not know if she will ever talk.

The family are fundraising for another toddler, Flora Gentleman, aged three, who needs cancer treatment abroad.

Stacie said: "Everybody is so interested in Sydney, she's got so many followers on Facebook.

"I've set up a Facebook just for her so people can keep up to date with her condition and treatments."

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