Lillian, almost age 5, is living with Juvenile Arthritis, mitochondrial disease, Famillial Mediterranean Fever, cyclic vomiting syndrome, partial complex seizures, and recently diagnosed Wolfram Syndrome. There is nothing normal or common about her diseases.
Familial Mediterranean fever (FMF) is a hereditary inflammatory disorder. When you include Juvenile Arthritis, you have a child who is in significant bodily discomfort. Also affected by Wolfram syndrome, Lillian must manage the rare genetic disorder, also known as DIDMOAD (Diabetes Insipidus, Diabetes Mellitus, Optic Atrophy, and Deafness), which can cause diabetes mellitus, optic atrophy, and deafness as well as various other possible disorders.
Despite her physical condition, she is a smart, happy, loving, social and compassionate girl. When her body allows it, she is active and looks like a “normal” four year old.