My child suffers from severe epilepsy, with frequent and unpredictable seizures that require immediate and skilled intervention. I have developed the ability to recognize the subtle signs of an impending seizure and act quickly to prevent further complications. A new caregiver might not detect these early signs or know how to respond effectively, increasing the risk of a prolonged seizure or status epilepticus. I should be the primary caregiver to ensure my child’s safety and well-being. The provisions in HB909/SB488 have allowed me to continue providing the vigilant care my child’s condition requires. The Virginia General Assembly’s support has been critical in maintaining the immediate response needed to manage severe epilepsy. Amending these provisions could lead to delayed care, resulting in life-threatening seizures and long-term neurological damage. The current waiver draft could force us to rely on caregivers who might not be equipped to manage severe epilepsy, putting my child at significant risk.

My immediate recognition and response to my child’s seizures are crucial in preventing severe complications, making my role as the LRI indispensable. If any amendment changes my position as the first option, it could delay crucial interventions, increasing the likelihood of prolonged seizures and irreversible brain damage.