Team Year 1 /Year 5 is fundraising

Charlotte & Emilia Challenge for PANS/PANDAS UK

£80.00 + £13.75 Gift Aid = £93.75
Donated to Team Year 1 /Year 5’s £250.00 Goal
6
Sponsors

Team Year 1 /Year 5’s story

Charlotte & Emilia will each be running 4km (Emilia) and 6km (Charlotte) of a 21

km half marathon in two different teams In support of Pans Pandas UK.


Charlotte became extremely ill following with what we assumed to be influenza in Year 2 aged just 7. After being bedridden with a high temperature for 2 weeks in March '16 she completely changed overnight developing severe neurological symptoms. It took us almost 2 months to obtain a diagnosis for a condition many Doctors had simply not heard of. What we now know is that she had a type of immune-mediated encephalopathy - (inflammation of the brain) following infection.


She has endured countless blood tests, MRI’s, EEG’s, Lumbar Punctures and 4 Intravenous immunoglobulin infusions to correct her immune system and seen in excess of 20 Doctors. She is recovering from her ordeal as the brain takes a long time to heal. We were fortunate as we had the means to get the care she needed but even then it was a tremendous battle.


However, there are many children who are simply not receiving timely and appropriate care to manage what is an extremely frightening condition for parents and children alike.


PANS PANDAS UK was established in 2017 by a small group of parents affected by the illness to ensure timely and accurate diagnosis and to raise the profile of these conditions. They have been instrumental in helping create network of physicians consisting of Neurologists, Immunologists, Paediatricians, Neuro-Psychiatrists and Neuro-Psychologists and the first UK treatment protocol was created in 2018 which is currently pending review by the Royal Colleges.


All funds raised will be passed to the charity irrespective of whether my target is reached, not reached or exceeded.


Updates


PANS/PANDAS UK

PANS and PANDAS are a set of conditions which result in inflammation of the brain, causing a variety of neuro-psychiatric conditions such as OCD, tics and eating disorders. Please see our website for more information. www.panspandasuk.org


PANS PANDAS UK is a Charity which was established by a dedicated and determined group of parents with children who are affected by PANS or PANDAS in order to raise awareness and understanding of these conditions amongst the general public and medical professionals.  PANS PANDAS UK are working closely with a Network of Doctors in order to ensure better diagnosis and early effective treatment for those suffering with these little understood, but life changing conditions.


It is the mission of PANS PANDAS UK to ensure that these conditions are known about in every GP Surgery, every school and every hospital, so every child can receive an early diagnosis and effective treatment. 

Registered Charity Number: 1178484.

Find out more about PANS/PANDAS UK

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