At almost 3years old, Eliana cannot walk, talk, or eat by mouth. We carry a pulse oxygen machine, oxygen tank, feeding machine and rescue medication everywhere we go. We often find ourselves explaining her rare condition to healthcare providers or ER staff because they have either never heard of or never encountered a patient with the diagnosis. For this reason, we are looking to raise awareness for the children and families that are currently battling uncontrolled epilepsy and have likely been misdiagnosed or do not have access to genetic testing to identify the condition in which they may be living with.