THE mother of a young girl with a debilitating disorder who has been campaigning for her daughter after her life-saving treatment was discontinued only months after it started has been shortlisted for a Proud of Barnsley award.
Evie Prior, ten, has had her life transformed by a little-understood condition that sees her spend hours at a time on the toilet, convinced she hasn’t finished, and wash her hands ‘until they bleed’.
When she was four years old, Evie began to show signs of paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (Pandas).
The condition is supposedly caused by streptococcal bacteria - a common cause of sore throats - which causes a person’s antibodies to attack themselves and inflame the basal ganglia, the part of the brain responsible for movement, behaviour and emotions.
Evie’s battle with Pandas started after a bout of chicken pox, when she began to exhibit OCD-like symptoms, separation anxiety and temper tantrums, which her mum Helen said were out of character for a usually bubbly girl.
“She didn’t leave my side,” said Helen, 36. “She needed caring for round the clock for 18 months.
“We couldn’t predict whether the next hour or day would be a good one.
“It was heartbreaking to see a child who was deteriorating before my eyes, physically and mentally wasting away. And there was absolutely nothing I could do to help her.”
Evie’s condition was never formally identified and her behaviour again began to spiral once a course of treatment for a bout of tonsillitis was finished.
She became obsessed with going to the toilet, sitting until she got pins and needles in her feet as she was convinced she hadn’t finished. As well as this, she would spend days out in public toilets, going through rituals and washing her hands ‘until they bled’.
Her obsessive trips to the toilet were diagnosed as a urinary tract infection in 2014, and again after a course of antibiotics, she returned to relative normality.
But without consistent treatment, Evie’s condition deteriorated, reaching its lowest point in May 2017, when she stopped eating, thinking anything she was putting into her mouth was contaminated.
“She was crying and constantly hungry, it was soul destroying,” said Helen.
Short of options and with her daughter’s weight dropping, Helen began to look into Pandas online, consulting with a specialist in the United States and eventually coming across a Facebook group for people with the condition.
She made contact with one of the few specialists in the UK, Dr Tim Uhbi at Darlington Memorial Hospital.
And Evie was referred to Birmingham Children’s Hospital for immunoglobulin treatment in May last year, which sees her injected with antibodies that reinforce her own.
Helen said: “It was bittersweet when we found the treatment. I was so relieved someone had finally listened to me.
“It got her eating back on track. It was like a miracle.
“She started slowly but surely picking up different things, and if there was a bowl of shared sweets she got brave enough to put her hand in and choose one.
“She still can’t open doors or touch communal surfaces like TV remotes or light switches, but we’ve seen such good improvements from two treatments.
“It saved her life.”
However, the family were dealt another blow when the treatment that had been a lifeline for Evie was discontinued in November after the second session.
She is now on long-term steroids and antibiotics, but these are only a ‘sticking plaster’ fighting the inflammation, said Helen.
Evie’s family have been raising funds for alternative means of accessing the treatment Helen says would give her daughter her life back.
They set up a GoFundMe page to raise money for the treatments on gofundme.com and have hit their target.
Now, they have engaged with a private clinic and are waiting to schedule an initial appointment.
Helen has been nominated for Carer of the Year for `
looking after her daughter through the difficult circumstances of her condition and campaigning for accessible treatment.
See GoFundMe here to donate.