Weʼre raising £1,000 to Help Esmae-Rose fight PANS / PANDAS
- Newton Aycliffe, UK
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One day we wished upon a star and Esmae-Rose came true. She was perfect. She was funny. She was our family's dream come true. Always happy. Always playing. Always the light in everyone's day. The only worry she ever had was having to wait for cookies. Always fearless, always busy and always excited. Beautiful. Intelligent. A social butterfly. Kind. Perfect.
On the first day of the school holidays (2017) Esmae came out in chicken pox. Everything seemed to go swimmingly and the pox didn't seem to bother her.
Over the following week we noticed Esmae started raising her shoulders and tipping back her head. Like a tic. It seemed purposeful at first and we thought it was just a funny phase she was going through.
Over a matter of days Esmae started to become distressed if she couldn't wave or blow kisses from a particular spot in the window. She started smelling her hands after touching things and her behaviour became 'naughty' and 'bossy'. Esmae became distressed at bedtime if things weren't 'right' or untidy - including her bed covers.
Esmae became angry, aggressive, repetitive, sad, violent, frustrated, anxious, vacant, impulsive, forgetful, emotional and 'lonely'.
Esmae's tics worsened. We were terrified. We went to DMH and asked them to help us. Esmae was admitted. She had an EEG and a liver function test. They couldn't help us.
Esmae stopped eating. Even the things she loved. The tics got worse. We watched her deteriorate. She had developed horrific OCD symptoms and started begging us to help her.
Esmae-Rose has PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep) / PANS (Pediatric Acute-onset Neuropsychiatric Syndrome)
Please help us try and get our daughter back. Please.
I can't regulate my emotions, not because I'm another 4 year old having a tantrum, but because my immune system got confused and started attacking me and my brain instead of the nasty bug called STREP. I can't speak clearly and sometimes slur my words, but not because I didn't learn, I used to speak perfectly, but my brain sometimes gets confused and I lose control of my tongue and can't swallow, this means that sometimes I drool... a lot.
Sometimes I have compulsions, actions I need to complete, like... jumping up and down, flapping my hands, running away, telling people that I don't know that I love them, hurting myself, intrusive thoughts, tic and twitch, wet myself, forget most of my day or what I am doing. I don't mean to do things, I just have to, not because I'm naughty, but because my poorly brain is all swollen and hurt, it sometimes makes me angry and violent and very, very sad and... not me anymore. Please help me not be frightened of my world anymore, I wasn't always like this... one day, not that long ago, I just woke up like this and it can happen to ONE in TWO HUNDRED CHILDREN, just like me. - Esmae-Rose's Perpective
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- 5 months ago
Sarah Bailey5 months ago
Thank you to everyone ♥️
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Jun 14, 2018
Well done to Reuben and his friends for completing their sponsored walk. Love from Great Auntie Pam x
Jun 14, 2018
Well done to all the little ones completing their sponsored walk from SHINE children's community choir, Newton Aycliffe x
May 7, 2018
Hope this helps from myself Shelley Archie & Harvey xx
May 7, 2018
Hope this helps from drew Julz & Shannon x
May 1, 2018
Well done to all the little walkers.xx
Apr 29, 2018
You are so loved 💟 💟 💟
Apr 5, 2018
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