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The toddler has a genetic condition so rare doctors had to google it

The toddler has a genetic condition so rare doctors had to google it

Sydney Miller, 2, is described as a newborn baby by her mother due to her primrose syndrome (Image: SWNS)

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

Two-year-old Sydney Miller is described by her mother as a newborn baby suffering from Primrose Syndrome, which affects just 50 children worldwide.

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 wrong was that Sydney couldn’t open one of her eyes, leading to fears that she might have been born without an eyeball.

She was diagnosed with Horner’s syndrome, in which one eye is blue and the other brown, which is an indicator of an underlying condition and sparked a series of appointments while medics tried to figure out what was wrong.

A doctor treating Sydney had attended a seminar on Primrose syndrome, which is so rare even healthcare professionals have to Google it.

Sydney Miller. See SWNS story SWSCprimrose. A toddler with a genetic condition so rare only two other children in the UK have been diagnosed with it has her hair shaved for her own safety. Two-and-a-half-year-old Sydney Miller is described by her mother as a newborn baby suffering from Primrose Syndrome, which affects just 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 he was born on March 18, 2020, just before the first lockdown. The first sign something was wrong was that Sydney couldn't open one of her eyes, leading to fears that she might have been born without an eyeball.

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

Stacie Miller with her daughter Sydney Miller

Sydney is now starting to attend a supplementary needs nursery where she has an occupational therapist on site (Image: Katielee Arrowsmith/SWNS)

Sydney is currently nonverbal and her parents don’t know if she will ever speak.

She can’t crawl or pull herself up, so Stacie has to carry her around, but the boy only weighs 20 pounds — about the same as a typical six-month-old baby.

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

Sydney is now beginning to attend a supplemental daycare center where she has an on-site occupational therapist.

Stacie, from Prestonpans, said the family were unsure of what the future held due to the rarity of the disease.

She said: “It’s very, very rare, there are only 50 children with it in the world.”

The couple have also realized that Sydney’s hair poses a danger to her.

Her mother noticed that Sydney pulled strands of hair from her scalp, which later came out in clumps.

Then she started chewing it.

Her hair will be shaved off on Friday to avoid the risk of choking in hopes she will outgrow the desire to pull it out.

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

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https://metro.co.uk/2022/06/01/toddler-has-genetic-condition-so-rare-doctors-had-to-google-it-16748371/ The toddler has a genetic condition so rare doctors had to google it

Justin Scacco

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