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Weʼre raising £2,000 to Help us to raise awareness for Olivia Olivia suffers from a rare form of EME which stands for (Ethylmalonic Encephalopathy)

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Story

Hi,

My name is Lauren Scott I am writing to ask you if you would be willing to help us advertise our sponsored walk for my friends terminally ill little girl.

We are trying to raise money to help raise awareness for her rare condition that she’s suffers from this is called EME.

Olivia’s Mum has explained in more depth about what she would like to do below.

Hi, this is just a brief email in regards to my daughters terminal illness. What am wanting to do is raise awareness for this very rare condition and help get Olivia's story get out. Olivia is 2years old and stuffers from Early Myoclonic Encephalopathy it's a very rare condition, Olivia is unable to hold her own head an has no mobility she is also fed through a peg feed, she still continues to have 50+ seizures despite all medications trialled she's even had steroids Vitamins nothing seems to be taking control so now I'd like to raise awareness for other families like mine as the next step is to try and get Olivia on this CDB OIL or to even fly her out to America to consult with a neurologist over their as I want to give Olivia best quality of life she has left. Also I had no warnings through out my pregnancy with Olivia nothing picked up on any scans either . Also when Olivia was 4 weeks old that's when i noticed something wasn't right with her so I had taken her to my GP for him to turn around and tell me I was an over worrying mum and to take her home and continue with calpol despite the GP telling us this Olivia deteriorated very fast she became lethargic an no sound was coming from her cry, I ignored the GP and took her straight to AnE where they kept her in for lots of investigations she had MRI scan eeg scan where it revealed Olivia had a severe form of epilepsy (Eme) and now I have a terminal ill little girl going from a healthy pregnancy to health birth her feeding herself to now nothing as a seizure she had for 3hours took everything back an she is unable to do anything now.

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    Page last updated on: 5/20/2018 11:19 AM

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