Your friends are fundraising. Don't miss out, opt in.

0

%

£369raised of £1,000 target by 16 supporters

Weʼre raising £1,000 to Help Esmae-Rose fight PANS / PANDAS

Newton Aycliffe, UK

What is crowdfunding?

Crowdfunding is a new type of fundraising where you can raise funds for your own personal cause, even if you're not a registered charity.

The page owner is responsible for the distribution of funds raised.

Story

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

Share this story

Updates

1

  • Sarah Bailey5 months ago
    Sarah Bailey

    Sarah Bailey

    5 months ago
    Update from the Page owner

    Thank you to everyone ♥️

    Share this update to help us raise more

6 months ago

Sarah Bailey started crowdfunding

Leave a message of support

Page last updated on: 6/14/2018 8:38 PM

Supporters

16

  • Amy Johnson

    Amy Johnson

    Jun 14, 2018

    Well done to Reuben and his friends for completing their sponsored walk. Love from Great Auntie Pam x

    £5.00

  • Amy Johnson

    Amy Johnson

    Jun 14, 2018

    Well done to all the little ones completing their sponsored walk from SHINE children's community choir, Newton Aycliffe x

    £10.00

  • Chris Pringle

    Chris Pringle

    May 7, 2018

    Hope this helps from myself Shelley Archie & Harvey xx

    £50.00

  • Drew Wilson

    Drew Wilson

    May 7, 2018

    Hope this helps from drew Julz & Shannon x

    £10.00

  • Mandy Turnbull

    Mandy Turnbull

    May 1, 2018

    Well done to all the little walkers.xx

    £5.00

  • Nora Brewster

    Nora Brewster

    Apr 29, 2018

    You are so loved 💟 💟 💟

    £20.00

  • Priscilla

    Priscilla

    Apr 5, 2018

    £10.00

Sarah Bailey

Become a supporter

Help Sarah Bailey raise more

About the fundraiser
Sarah Bailey

Sarah Bailey

Newton Aycliffe, UK

Report this Page

* JustGiving crowdfunders pay a small fee for our service. Find out how much it is and what we do for it.

Donate