When Julia Mikol was born on October 28, 1978 with Severe Combined Immunodeficiency Disease (SCID), the technology to support her life existed; the system to grant her a childhood did not. For 2½ years, she lived in a hospital ICU supported by a respirator while her parents, Margaret and Yves Mikol, worked to find a way to bring her home. The Mikol’s first child Christopher was born in 1976, and also had SCID. He died 4 ½ months after his birth. This painful experience strengthened the Mikol’s determination to get Julia released from the hospital.
In 1981, the Mikols made history by bringing Julia home. Julia became the first child in the state of New York, and only the second child in the United States, to leave the hospital and go home while on life support. By bringing their daughter home, the Mikols gave Julia a childhood, improved her curative development – and reduced the cost of her healthcare by 85%.
Other parents with children in similar situations sought out the Mikols for help and advice, and so in 1983, Margaret and Yves established SKIP of New York, a 501(c)(3). For the first few years, SKIP operated out of the Mikol’s apartment. Demand for and support of SKIP’s services grew quickly. In 1986, the U.S. Department of Health & Human Services awarded SKIP with a Federal Special Projects of Regional and National Significance (SPRANS) grant. It was the first such award to a grassroots family organization and it supported SKIP’s efforts to forge new ground facilitating home care for medically fragile and developmentally disabled children.
In 1986, Julia died at 7 ½ years old. SKIP became her legacy – along with the thousands of children SKIP helps each year.
To learn more about SKIP’s history, click to see SKIP’s SKIP of New York Timeline.