A Little Girl From Beirut

Sawsan Moubarak is 8 years old and lives 45 minutes South of Beirut, Lebanon, in a town called Zefta, District, Nabatieh.

Her father, Jason, is an inspiration for all parents, especially me.  His wife gave birth to Sawsan and passed away in childbirth and he takes care of Sawsan and two other children; a girl, 13, and a boy, 10.   “After Sawsan showed symptoms of NPC, you can imagine how my life turned around, especially with her mother not here.  Words cannot describe the agony and sadness I am going through,” he told me.

Sawsan is now on Keppra 500 twice a day.  She has many, “narcolepsies and cataplexies: 5 to 6 times a day.  And seizures too, even with the Keppra, she has them once a week.”