My name is Super Spiro. I was diagnosed at 5 months old with Infantile Spasms, which eventually led to my LGS diagnosis at age 3. I am a CVI leader and attend Overbrook School for the Blind. I also have Hypotonic CP and love walking in my Trexo.
I try to live my life to the fullest thanks to my parents and all the caregiving they provide. My parents never let being non-speaking with many different types of seizures hold me back.
I have had a total of 10 surgeries so far including VNS and a Corpus Callosotomy to help with my seizure control, in addition to taking daily medications.
A cure would mean everything to me. I have refractory epilepsy which makes me medication resistant and now surgery resistant. I am out of medical interventions for my seizure type at this time. It would change my life and make caregiving less stressful for my family if a cure existed.