THE adoring parents of a “miracle” baby are slowly adjusting to life without their perfect little girl.

Less than four months ago Esmae-Rose Bailey was fit and eagerly anticipating her first day at school.

But at the start of the summer holidays, the four-year-old contracted chicken pox and within hours developed obsessive compulsive disorder (OCD), physical tics, anxiety and underwent a personality change.

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She was diagnosed with a streptococcal infection (strep) and Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infection (PANDAS)/ Paediatric Acute-onset Neuropsychiatric Syndrome (PANS).

Distraught mums Sarah and Jemma Bailey, of Newton Aycliffe, say the rare and relatively unknown disorder, which causes brain damage, has radically changed Esmae-Rose's life.

Sarah, 35, said: “Our whole life from that point came crashing down. All we could do was wait and watch. It’s like someone sneaks in one night and steals your child and throws a new one back at you.”

Sarah and wife Jemma, 39, had their little girl after finding a donor.

Esmae-Rose arrived following a 40-week pregnancy and “traumatic” birth for Sarah.

“She was everything we wanted and was totally meant to be here. She burst into the world and everybody fell in love with her. She was the perfect child.”

In July, on the first Monday of the summer holidays, Esmae-Rose contracted chicken pox but suffered no temperature or sickness.

But from the outset Sarah and Jemma noticed her shrugging – lifting her shoulders up to her ears – and Esmae-Rose said she was unable to stop.

“We thought it was a phase but she started to become distressed and upset or aggressive if she couldn’t get to the window to wave to people and blow kisses,” said Sarah. “Over the rest of the week she deteriorated and by the next Monday we woke up with a completely different child.”

That day they took their daughter to Darlington Memorial Hospital where she remained for almost a week, being diagnosed with epilepsy.

But within hours of being discharged, the couple received a call telling them the diagnosis was wrong.

On the third Monday of the holidays, Esmae-Rose was taken to the Royal Victoria Infirmary, Newcastle, where she was admitted and diagnosed with strep – despite showing no obvious signs of infection – and PANDAS/PANS.

“She was in psychosis and wanted to jump off a balcony in the RVI and was banging her head against things repeatedly,” Sarah recalled. “Our life fell apart. She was screaming that we were monsters. It was like something had come in and possessed her."

Esmae-Rose now takes a cocktail of medication including a sedative, anti-inflammatories and antibiotics.

The disorder is a result of an infectious trigger, possibly strep in her case, which creates a misdirected immune response, causing inflammation in the brain.

Inflammation damages the brain and causes fast onset symptoms including OCD, anxiety, tics, decline in handwriting skills and personality changes – plus bladder control loss, regression in speech and motor neurone problems causing her to fall.

Jemma said: “She had a big personality and a zest for life and she just stopped. She didn’t want to leave the house, the shoulder raising became worse and worse.

“She was terrified of everything. She struggles to know what’s real anymore.”

Since her diagnosis, Esmae-Rose has managed to start school but the family are rarely able to leave the house and have been forced to make various changes including repainting and replacing lights because of her new extreme dislike of the colours.

Despite being little known, awareness of the disorder is being promoted across the UK, and globally, and a specialist is based in Darlington Memorial Hospital.

Sarah and Jemma are doing their part to raise awareness, alongside charity PANDAS PANS UK, as they continue the ongoing battle of finding treatment and coping mechanisms to provide Esmae-Rose with a normal childhood.

Their first port of call is cognitive behavioural therapy (CBT) with a PANDAS specialist - but they need financial help to fund it.

“It’s horrific and the single most terrifying experience I’ve ever gone through, and the saddest, said Sarah. "We don’t know what we’re up against.”