Dalila Kessaci and her family feel like they are living through a nightmare that will not end. Dalila’s three year old daughter, Mellina, suffers from Lennox-Gastaut Syndrome (LGS) — a severe form of childhood epilepsy, which is particularly resistant to conventional medical treatment. Mellina has as many as 100 life-threatening seizures a day. Her parents and her two older siblings live in a constant state of anxiety and sleeplessness as they watch their youngest family member decline. At present, Mellina does not crawl, sit, or talk.
Since infancy, Mellina has tried many anti-epileptic drugs, including Prednisone, Corticotropin, and Vigabatrin. Not only did these fail to stop the seizures, their side effects were devastating. Her seizures actually became more frequent, and the Vigabatrin caused her to faint repeatedly. In consultation with her doctors, Melinna’s parents decided to wean her from the anti-epileptic drugs she was taking, and Melinna still has many seizures daily.
In August 2013, the Kessaci family watched Sanjay Gupta’s CNN special, “Weed,” and were thrilled to learn about the positive effects of Cannabidiol (CBD) on children with epilepsy. “We all had tears of happiness in our eyes when we heard about something that might stop or relieve our daughter’s seizures,” Dalila said. “I can’t understand why we are being prevented from giving our child a medicine that we know may save her life.” If the Compassionate Care Act doesn’t pass soon, the Kessaci’s may be forced to move to a state where medical marijuana is legal.