You’ve got to get them home too: An activist patient advocate for children

In 1978, Julia Mikol was born, with severe combined immunodeficiency, which required her to live in a bubble—a completely sterile environment. When she was three months old she had a bone marrow transplant, which gave her a functioning immune system, but left her unable to breathe on her own. She spent the next two years in the Intensive Care Unit at Memorial Sloan-Kettering Hospital in New York City.

Her mother Margaret moved into the hospital to be with her. Because of the huge hospital bills - $350,000 a year – the Mikols exhausted their medical insurance and had to rely on Medicaid. Though Medicaid would pay the huge hospital bills, its rules initially forbade reimbursing the Mikols for caring for Julia at home much less expensively, at about $50,000 a year.

But after a long bureaucratic struggle, the Mikols became the first parents in New York, and only the second family in the nation, to benefit from the rules of a new federal program that allows Medicaid payment for home care for a child like Julia on life support. "The process transformed my personality," said Margaret. "I had been shy and timid, and I became brassy and obnoxious. I changed into a beast to protect my child."

Julia’s condition worsened as she got older. At age eight, she refused a recommended heart and lung transplant, and her parents reluctantly agreed. Before she died, Julia asked her mother to promise to help other children: "You got me home. You’ve got to get them home too."

Sick Kids Need Involved People is the fulfillment of that promise. The organization, with a shoestring budget, has helped 7,000 families deal with their children’s life support, cancer, HIV/AIDS, sickle cell anemia, muscular dystrophy, cerebral palsy, autism, and other conditions. Margaret and her staff help parents navigate the hospital, insurance and Medicaid systems, and assist with school and housing issues, and advise parents on dealing with the sick child’s healthy siblings.

Margaret hopes one day to build a clinically staffed residential community.

Advice: Forward this to your friends with hospitalized children.

Read another of our hero stories, or read Caroline Kennedy’s source story in the June 4 issue of Time magazine.