To remember our beautiful daughter Erin who passed away last year from Encephalitis and became an Organ Donar Angel, we will be taking part in a New Years Day Superhero Dip and raising money to help another local girl Leah Goss currently suffering from Encephalitis. here is Leah's story ...
Leah fell ill almost 2 years ago. Her symptoms were acute and psychiatric in nature. Within weeks she had gone from a happy, care free child, to being totally debilitated by her illness and housebound. Drs initially diagnosed PANDAS, (Paediatric Autoimmune Neuropsychiatric Disorder Associated with Strep).
Within a few months, Leah's condition deteriorated rapidly. She was barely able to walk or talk. Leah was hospitalised and further tests carried out. These showed she was critically ill with NMDA Encephalitis, a rare but potentially fatal autoimmune disease, which causes swelling of the brain.
Emergency infusions of IVIG were given which made huge improvements and thankfully Leah is walking and talking again. Unfortunately the benefits fade over time and Leah had only short relief from the psychiatric symptoms, she has had five rounds of this aggressive treatment.
Leah was referred to specialists in London and America who have been crucial in paving a way forward. Leah is now embarking on their suggested treatment plan involving several medications and monthly high dose steroid pulse treatment, which targets reducing inflammation on the brain. The consultants have confirmed Leah has an Acquired Brain Injury as a result of the encephalitis. We are hopeful the new treatment will bring some improvements but Leah will require intensive rehabilitation involving both inpatient and long term follow up therapies. All current fundraising is going towards these costs.
Leah struggles daily with acute anxiety, fatigue, headaches, visual disturbances, OCD, and much more. She is very different in personality to the child she was pre-illness and rehabilitation is essential.
Thank you x