March 14, 2013 | 1042 views
Fighting rare disease, Merrick mom wants change in state busing law
Tara Notrica, a 48-year-old Merrick mother of two, says that over the course of several years before the fall of 2010, she and her husband spent tens of thousands of dollars on private transportation to send their children from their home to elementary school and back again.
The Merrick School District determined that the family of four lived too close — by less than nine yards — to the school that the children attended to qualify for busing, Notrica said. But her husband’s job, which he commutes to daily in New York City, made it impossible for him to take his young son and daughter to school in the morning or pick them up in the early afternoon, and Notrica was too sick to walk or drive them to and from school.
She has now begun an advocacy campaign to change state education law to allow school boards to make exceptions to the busing limits in cases like hers, where parents’ physical impairments prevent them from taking their children to and from school.
Desperate for a bus
Notrica suffers from a rare disorder, mastocytosis, also known as mast cell disease. It is caused by the presence of too many mast cells, which contain substances like histamine that regulate allergic reactions, according to the Office of Rare Diseases Research at the National Institutes of Health. The condition can cause leukemia-like blood disorders in certain cases.
Notrica said she is highly susceptible to dozens of different allergic triggers, which can send her into anaphylactic shock. “I was creating excessive amounts of immunoglobulin,” she said. “I had to gradually be eased on to medications, because my body was rejecting everything … It’s rare. There’s no cure; there are very few treatments. I’ve been on a tremendous amount of medications.”