Margaret Storey and her daughter JosiePhoto from Lurie Children’s Hospital

Lurie Children’s Hospital recently recognized Evanston resident Margaret Storey with a Patient and Family Award, saying she is “a true advocate for families of children with complex medical conditions and disabilities.”

Dr. Storey’s daughter, Josie, was born with Aicardi Syndrome, and Dr. Storey has been an active advocate for children with developmental and physical challenges. Lurie Children’s Hospital said, “Josie is the source of inspiration for her mother and so many others engaged in advocacy efforts. Dr. Storey’s intelligence and tireless advocacy efforts have resulted in meaningful legislative action and public awareness that is benefitting the lives of countless Illinois families.”

Dr. Storey is a member of the hospital’s Public Policy Committee, which advises the hospital on all matters of public policy that the hospital may undertake, such as initiatives to address gun violence against children, preventing child obesity, and efforts to coordinate care for medically complex children in the state of Illinois.

Working with the Epilepsy Foundation of Greater Chicago, Dr. Storey wrote and testified to legislators in Springfield in support of expanding the state’s medical marijuana program to include children with epilepsy.

Dr. Storey worked with Lurie government relations staff to lobby legislators in Springfield to preserve the Medically Fragile/Technology Dependent Medicaid Waiver – a state program that waives the income requirements normally associated with Medicaid in order to provide families with the nursing and other supports necessary to keep their children at home, rather than in nursing homes or hospitals.

Aicardi Syndrome is a very rare genetic disorder that causes uncontrolled seizures and significant physical and developmental disabilities. “Josie began having seizures at the age of three months and has had them nearly every day since that time.  Because of her, I’ve tried to move policy in other areas to help address the needs of very significantly disabled kids –  I think this was part of the reason for the award, too,” Dr. Storey said.