Dec. 18, 2015
Posted by Lisa Sencen
As I was lying in my bed during the dark hours of night at 100 pounds, attached to a feeding tube for twelve hours a day and flirting with death, I wondered what was truly going on with my body, and what would happen to my two small children if I died.
Prior to March 31, 2006, I had it all. I had a happy marriage, a wonderful husband, two beautiful children and my career as a Special Education Teacher. “In a New York Minute,” everything drastically changed. It all started with the catastrophic hair loss that left me bald in 5 short days, multiple misdiagnoses, trials of toxic drugs, and ultimately led to the inability of my body to absorb vitamins, minerals and nutrients from food sources. Each day, I struggled with trying to raise my two children while concurrently performing extensive research and traveling the country in search of a proper diagnosis. On April 1, 2011, I was finally diagnosed with Mast Cell Disease.
Over time, I have convinced my doctors to try a therapy that would potentially be a cure. This ultimately led to an autologous stem cell transplant which I continue to recover from.
Simultaneously, I continued to advocate for a New York State piece of legislation that will provide school bus transportation for certain children. NYS Bill S248B-2015, sponsored by Senator Jack Martins, passed in the Senate on June 15, 2015. NYS Bill A1470B-2015, sponsored by Assemblyman Cusick, remains in the Assembly Education Committee.
I am hopeful you will consider sharing my story to serve as a source of inspiration for others who are battling a rare disease and to help pass this important piece of legislation.
If you require any further information, please feel free to contact me by email at [email protected].
I look forward to hearing from you in the near future and for your support.
Thank you for your time and consideration.