Dariana is the 3rd daughter of 4(with 1 son). She is 24 years as of this last Jan 29th. Dariana is pretty unique, she has a rare genetic illness called Tuberous Sclerosis, this is caused by a missing gene, which in turn causes symptoms such as learning disabilities, tubors(non invasive tumors), weakened musculature, multiple seizures known as Lennox-Gastaut syndrome. She cannot talk or really communicate, nor can she dress herself, bathe herself, feed herself, brush her teeth or even use the toilet independently. If she were left to herself she would walk into the middle of the street with oncoming cars. This in almost 99.9% of families would be devastating, but I am a believer that what does not destroy you only makes you stronger.

By that definition Dariana should be nearly a super woman. As parents we have made it so she is so much a part of our day to day life that it is like breathing, you know you have to breath but it is all part of your body, and it is so with Dariana. I am not writing this the way it should be “a beginning, a middle and an end”. It more follows who I am, a person with ADD. So we start out with her over the last few days. We have been trying to get her onto a new medication called Banzel and it seems to be a good one. SSI Medicaid though is having trouble clearing it so we have to wait but then when she does not take it she can have over 100 seizures through the evening,

She has a bed in our room so we can keep an eye on her, we can tell when a series of seizures is about to happen, her little dog “Gizmo” starts to bark and run around in circles. We then pull her into our bed(it is a huge Egyptian King) and we begin the process of holding her while she goes from a petite mal to a laughing seizure to a drop seizure to a grand mal seizure and all within 20 minutes, then she starts it again, every muscle tensing to the point where you think her arms or legs make break. Finally she finishes it and we all rest. The medication is one of the first meds that seem to be helping but we will see. Tomorrow hopefully I can get the State to approve the meds. I am also contacting the drug company to see what they can do, Well more later on.