Evie Prior is an 11-year-old girl who has a little-known condition called PANDAS (paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections) which makes her brain swell and alters her personality by giving her anxiety and OCD-like symptoms.
Evie and her family, who are from Redbrook, have been seeking treatment - as PANDAS made the little girl obsessed with going to the toilet and washing her hands ‘until they bled’ - but effective treatment was discontinued in the UK after the family managed to get a second session.
This year, Evie’s mum Helen Prior set up a GoFundMe page and helped raise enough funds for treatment abroad in Florida, where Evie had two bouts of treatment costing around £12,000 in November. The family will be trying to fundraise again to go back for more treatments, as they say it will help ease Evie’s anxiety and OCD-like symptoms, as well as helping her be able to concentrate at school.
Reflecting on how things have changed for Evie since Christmas last year, Helen said: “2013 was our last normal family Christmas. Evie had got PANDAS earlier in that year but the symptoms early on were relapsing and remitting and thankfully at Christmas time she was a healthy and happy child.”
From 2014 onwards, Helen said Evie’s condition became worse as she spent hours dissecting her food into tiny pieces ‘looking for black bits’.
“Even opening an Advent calendar was traumatic. Every day she would go excitedly to open the door only to get distressed trying to get the chocolate out without touching it. She would then inspect the chocolate in great detail to reassure herself it was ‘safe’ to eat before carefully biting around the edges and then discarding the part of the chocolate she had been holding.
“Some days the chocolate wouldn’t pass the inspection test at all and Evie would just throw it away in despair with tears running down her cheeks. Such a simple activity that all children enjoy but for Evie it was torture.
“One year on and still the battle continues. Evie’s Christmas wish was simply to feel better and once again for her ‘IVIG treatment to work’.
“Evie has joined in a lot more of the festivities this year. She is in school and has done a Christmas concert and had a Christmas party. She helped decorate the house and has opened her advent calendar - which makes me smile every morning.
"She was looking forward to her Christmas dinner and unwrapping her gifts without having to wash her hands constantly.
“Looking back, I am pleased to say that the need to scrub her hands between opening every parcel and the torture with trying to eat any food aren’t getting in the way of this year’s festivities. We have come such a long way.”