My daughter Isabela is 14 years old. Isabela is developmentally 3 to 6 months of age. Isabela was diagnosed with Refractory Intractable Epilepsy at 9 months old. Isabela currently has 5 seizure types. Upon diagnosis Isabela was having over 1000 seizures a day.
Isabela still battles seizures every day. She currently uses all therapies available to help control her seizures. She has a Pacemaker called a Vegal Nerve Stimulator. She is fed on a constant feeding pump with a prescription food to help control her seizures. Isabela also is currently on 5 seizure medications and many supplements to help her have seizure control. She currently has about an 85% seizure control rate.
The seizures have rendered Isabela quadriplegic, non-verbal, g-tube fed, with many, many medical needs. Isabela works really hard trying to perform life skill tasks, such as holding her head up in the wheelchair, and swallowing. She has a very hard life, but we try our best to give her the best quality of life.
Isabela enjoys massage therapy, music therapy and medical homebound schooling when she feels well.
Myself, Henry (Isabela's dad) & Spencer (Isabela's brother) love her very much. She is truly an angel. I am a Radiation Therapist. I worked in Oncology many years. I no longer can work in Oncology. I stopped working when she was diagnosed. This diagnosis and this seizure disorder requires Isabela to have 24 hour care.
Our family does fear that if Isabela fails any of her current therapies, she has no other options to regain seizure control at this time. She has tried all medications.
The passing of The Compassionate Use Act -- Senate Bill 339 & House Bill 892 would give Isabela another therapy option.
Compassionate Access for Epilepsy (CAFE) is a project of the Epilepsy Foundation Texas affiliates. CAFE Texas brings together Texans and nonprofit organizations that support the therapeutic use of cannabidiol (CBD), a non-psychoactive component of cannabis, to treat epilepsy.