Those Silent Tears

As I write this story, I’m getting ready to celebrate my 11-year anniversary. It is not what you would typically think of, but instead, my long and sometimes very grueling battle with a rare hematological/immunological disease called Mast Cell Disease. This disease can cause you to go into anaphylaxis from multiple triggers including environmental exposures, chemicals, foods, medications, perfumes, colognes, extreme temperatures, and many other things that a patient’s body is hypersensitive to.

Getting diagnosed took five years and was an extreme uphill battle. My life over the last 11 years has been filled with endless doctor visits, extended hospital stays, invasive tests, immunosuppressive drugs, chemotherapy drugs, monoclonal antibodies, and even an autologous stem cell transplant. Throughout the years, I have missed so much of my two children’s lives but remained grateful to still be alive.

During this long, arduous journey, I simultaneously fought another battle. My two young children weren’t eligible for school bus transportation, because we lived too close to our zoned school. I was too sick to either drive or walk them to ensure their safety. As a result, I had no choice but to hire private school bus transportation for them at an exorbitant monthly cost.

I shared my story with former Senator Charles Fuschillo, and he sponsored NYS Bill S595 (same as NYS Bill A4760 sponsored by former Assemblyman Harvey Weisenberg), which would provide school bus transportation for certain children. The bill has passed multiple times in the Senate (sometimes unanimously) and once in the Assembly. The language of the bill has been revised over the years to address concerns.

This legislative session, NYS Bill S04020-2017 is sponsored by Senator Brooks, and NYS Bill A01364-2017 is sponsored by Assemblyman Cusick. At this time, I respectfully ask you to consider supporting my efforts. While my children have graduated from the district in which we were not zoned for school bus transportation, I continue to advocate for all families with extreme and extenuating circumstances who may be in dire need of this service. Children who have a seriously ill parent or guardian should not have to worry about or have the extra burden of wondering how they will get to school in a safe, consistent manner on a daily basis.

More information about my story can be found here.

Previously published: https://rocknrobin.tv/fighting-disease-school-bus-access/