Isabela is a delightful girl who started having seizures at 4 months old. Following this she was diagnosed with Infantile Spasms at 5 months old and at 3 years of age she evolved to Lennox-Gastaut syndrome and unfortunately she’s never experience seizure freedom.
Due to Isabela’s life long battle with seizures she is severely delayed, and requires round the clock care. Currently she can have 5 to 15 daily seizures including clusters of up to 7 minutes. These can present in tonic, tonic-clonic, tonic-myoclonic, gelastic, atypical absence, and atonic. Her day-to-day abilities and availability varies greatly due to her seizures. What I mean by this is that some days she is not even able to hold her up right, but other days she can scoot around her play area. The way her seizures present are always changing so really keeps us on our toes. One of the things I find more frustrating is when she cries inconsolably and she can’t tell me what she feels due to her inability to communicate and this breaks my heart every time.
Isabela has tried and failed about 14 medications, 2 rounds of the ketogenic diet and she’s also had a vagal nerve stimulator placed in. She has endured extreme side effects on some medications, so severe that she stopped eating and drinking causing her to have a feeding tube put in. She is currently taking 2 antiepileptic medications, 2 rescue medications for longer seizures a multivitamin. She is kept hydrated through her tube and also fed when she fails to eat proper portions. She does not tolerate the cold and the heat very well making summer and winter very rough for us.
Isabela is developmentally at about 6-9 months, she attends an all-special needs school that provides a robust therapy program and accommodates to her availability. Some of her interests are the swing, musical instruments and cause and effect toys. She has a smile that can light up a room and in all honesty she is a true warrior. She is my hero!
We will never give up hope for a cure!