I’m raising money for PANS / PANDAS because of an amazing little girl called Charlotte, who has battled with this syndrome for the last 2/3 years, her ever supporting parents Sue and Ian who have worked tirelessly to support Charlotte and ensured that the charity has come to fruition. And for Emilia, Charlotte’s younger sister, who demonstrates a compassion and understanding far beyond her years.
Below is a little bit more about Charlotte.
Charlotte became extremely ill following what we assumed to be influenza in Year 2 aged 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 slowly recovering from her ordeal as the brain takes a long time to heal. 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.’