Project Description

Daliyah’s Story

Daliyah is a vibrant, spontaneous, and bright girl. She loves the water and music. When she was just 5 weeks old she began having life threatening events. These were later determined to be generalized (full brain seizures). She had frequent status episodes and after every vaccination, some convulsions lasting hours and resistant to the pharmaceuticals given to stop it. Many were febrile/fever related. She was intubated many times. After sensing the severity of her seizures we started to change her diet to healthy foods and added in natural remedies, such as cannabis oils. We started to see drastic improvements and she was developing extremely impressive learning skills, including potty training. Her seizures are more relentless than any treatment we have tried. We fight it but the seizures always found a way back. After insurance hurdles reflux genetic testing was completed, they diagnosed Daliyah with Dravet syndrome caused by a de novo premature stop codon (nonsense) mutation. Dravet syndrome is a rare seizure disorder on the generalized febrile epilepsy spectrum.