My daughter Nuri, who is 11 years old, was diagnosed with Functional Neurological Disorder, in January 2023. Functional Neurological Disorder also known as FND, is a problem with the functioning of the nervous system and how the brain and body send and receive messages. This causes a range of neurological symptoms. In Nuri these symptoms are paralysis, nausea, difficulty swallowing, loss of speech, leg weakness, fainting, sensory overload, vision and hearing changes, brain fog, dazing off, GI issues, anxiety and so much more. Due to these symptoms, Nuri now requires 24-hour care. Nuri was a happy, creative child. Nuri loved dance, karate, school, hanging out with friends, and just running around and being a kid. Nuri’s life has completely turned upside down since this diagnosis. Normal everyday activities do not come with ease anymore. So showering, brushing teeth is now something that requires maximum effort. Going to school has become increasingly difficult due to symptoms.
Unfortunately, the insurance was not able to provide me with the support Nuri needs in order to keep Nuri safe so, I was forced to quit my job. My bills are piling up and Nuri’s condition continues to deteriorate without the proper treatment. The reason why the insurance would not provide support is because this is a disorder that one can recover from or improve with time and with proper care and prompt treatment. We are getting very close to the window where proper treatment can make a significant difference. Massachusetts does not have hospitals that treat children with FND, not with the complexity of symptoms that Nuri is presenting. After months of facing barriers with insurances, I sought out resources on my own and found Re-Active Physical Therapy and Wellness, a center in California that treats children with FND. This is an intensive 6-week program. The funds received will go to Nuri’s treatment and a small part to property payments I have fallen behind on due to this situation.
Thank you so much for helping Nuri get the proper care to get her life back.