Faiths Hemispherectomy epilepsy journey
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Right guys This is my 7 year old daughter Faith. She has undergone major brain surgery on the 2nd September 2020. The last 4 years Faith has suffered over 4,000 seizures, it has been a long hard road to get a diagnosis and hopefully a long term solution. She was finally diagnosed with Rasmussen encephalitis in 2018 and has been on the waiting list for a Hemispherectomy (shut down onw side of her brain for good) which is what has now been done. However, the surgery comes with its own consequences. Although the operation leaves her with a 75% - 80% chance of living a seizure free life, it will leave her with weakness down her left side. She will never be able to clench or use her left hand, or be able to use her periperal vision in her left eye and although she will be able to walk again one day, it will be a long and difficult road to get her there. We are finally moving from Birmingham Childrens Hospital to Tadworth down Surrey Monday 19th for the next 8 weeks, where we will try and get Faith back to walking use that left arm as best she can and back to her normal cheeky self. Over the last 4 years, Faith has been a tower of strength for me, and her 2 sisters, Ellie and Hope, she has shown strength and courage to everyone she knows and has taught us all many lessons. To see and not fully understand how much she has had to endure, it is unbelievable that she has never moaned, even when the brilliant doctors and nurses have been poking and prodding her to find the cause of the seizures, which we finally got after a biopsy and 12 pins into the right side of her brain to find the cause of l these seizures. 1 day after her Hemispherectomy she had an infection which both lungs collapsed so gave her Penicillin, unbeknown to us all she is allergic to it. Ended up in ICU. For 4 days she could even open her eyes due to the swelling of the operation only way she could communicate was with her right hand. After everything that happened she still gave a thumbs up to let us know she was OK.
My little girl deserves the world but once she is out of hospital, she wants a puppy, equally I hope this will encourage her to walk and learn basic functions again.
Organizer
Richard O'Connor
Organizer
England