Evie Prior, of Redbrook, 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.
The 11-year-old has had the condition since she was about four, and last year was able to go to America for specialised treatment after her mum Helen set up a Go Fund Me page to raise funds after treatment in the UK was stopped.
After going to Florida in November, Evie had two bouts of treatment costing around £12,000. 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.
Before Christmas, the family said Evie was coping well but in the New Year she was in A&E after ‘hitting a crisis point’.
“She’s now back on steroids which are really helping her,” said Helen. “However, they are a temporary solution. They are a high dosage and help her function better as well as think clearer. This is only temporary though and we will be seeing her neurologist in a few weeks time so hopefully we will be able to talk about another way to help her.”
After being told that Evie has been nominated for a Young Champions Award, Helen said she is ‘incredibly proud’ of her daughter and said not only has Evie been able handle her PANDAS to the best of her ability, she also has her own YouTube channel where she discusses how she deals with PANDAS, the different symptoms of it and how she copes day-to-day with it.
“The thing is, a lot of children with PANDAS are actually mute,” said Helen. “A lot of parents contact me from all across the world saying ‘my child thinks her channel is great’ or ‘thank you for doing this’. It’s great as it seems to help parents relate to their children and to understand what their children are experiencing - especially if they are mute.”
Helen also said Evie helped to diagnose her younger sister Annabel, eight, with PANDAS.
“She kept shouting that Annabel had PANDAS but both me and their dad said the similar symptoms might be for other reasons. I think we were kind of in denial but then we eventually took Annabel to get diagnosed and it turned out Evie was right.
“Evie has done so much and as much as it makes life difficult for her and us, she has developed so many skills with it. She has so much empathy and understanding towards others and she’s never judgemental. She has so much more empathy than a standard 11-year-old.
“I’m just so proud of her.”
Helen Prior was also awarded Carer of the Year for the Proud of Barnsley awards 2019.
Helen documents her daughter’s journey on her Facebook group - Hope For Evie - fundraising page.