Battling a rare disease, this mother of two is relentlessly working on a needed change to her community that would help protect children and help families dealing with similar circumstances.
My kids are my motivation and drive….we must protect our children and ensure their safety.
For Tara Notrica, a former special education teacher, the fight for school bus access to children with a parent or guardian suffering from a disability is a very personal one. Tara’s two children Jared and Samantha, now 15 and 11, were toddlers when their mother first fell terribly ill. It is this illness that for over a decade has shaped how this family’s love and devotion to one another allows them to continue this battle.
Tara’s health journey began in her early 20s when she would have yearly episodes of facial swelling, hives, vomiting, and constriction of airways. At that time, doctors thought she was having severe allergic reactions and would prescribe over the counter medication. On March 31, 2006, Tara woke up to a harrowing discovery that would take years to diagnose.
I lost all of my hair…woke up looked at my pillow case and there were hundreds of pieces of hair…clumps of her hair were coming out in the shower, eye lashes, eye brows… muscles were in pain and we couldn’t figure out what was going on
Countless visits to doctors and specialists over the next five years would result in diagnoses of alopecia, lupus, rheumatoid arthritis, Lyme disease, and other autoimmune disorders. However, as treatments for each of these were unsuccessful, Tara and her family couldn’t help but feel hopeless. Her condition was not improving; she was loosing muscle mass, and at one point weighed less than 100 pounds.
On April 1, 2011, Tara was finally diagnosed correctly with a disease in which she suffered from every symptom. That disease – mast cell activation disorder is a disorder caused by a genetic mutation that results in an excessive number of mast cells in your body. Mast cells are “master regulators” of the immune system. They come from bone marrow and go into all tissues of the body.
I just cried that day…I asked if it was an April fools joke and I just cried
Finally diagnosed and given an extensive treatment plan, Tara, credits her devoted husband of 19 years, Barry, for helping with her diagnosis and recovery.
Barry spent countless hours doing research. He made the connection between my high IgE levels and Mast Cell Disease to help me get diagnosed in my particular case. Vacation days and sick days became dedicated to constant doctor appointments, and our life became completely altered. We did what we had to do to save my life.
After being on this treatment plan for four years, although making improvements, it was clear that the medicines were still not working. Tara was still having episodes, sometimes daily. It was at this time that Tara consulted with Dr. Sergio Giralt, Chief of the Adult Bone Marrow Transplant Service at Memorial Sloan Kettering Cancer Center about a stem cell transplant. It was also Dr. Giralt and his team who cared for and monitored Robin during her treatment for MDS in 2012.
Tara’s stem cell transplant took place in July 2015 with the hope that her immune system could be reset.
We thought this has to be it…we thought it was going to be a cure
During the years without a proper diagnosis, Tara was still raising two very young children. However, she was too sick to walk or drive them to school. In addition to the medical bills that began to pile up, she was facing the tremendous expense of hiring private transportation for her children to and from school. This extra expense of around $700 was necessary because within Tara’s school district school bus access is only granted if the distance between school and home exceeds 1/2 a mile, regardless of the circumstances.
What if a family could not do this or did not have financial support or family support? How would they be able to do it?
In 2011, Tara assisted in lobbying for a bill that would allow certain children transportation to school for a lesser distance than two miles. Tara soon found support from others who are in similar circumstances and needed the assistance desperately but unfortunately the bill has yet to have been passed. That bill, which has been introduced into the assembly, is known as NYS Bill S7142/A9741 and is sponsored by Senator Jack Martins and Assemblyman Michael Cusick. The current legislative session ends in mid-June 2016 and Tara is hopeful that it will get passed and finally signed into the law.
Earlier this year, Tara received news that the stem cell transplant was unsuccessful. Still suffering from daily episodes she is hoping to receive a donor transplant in the future.
We have been very fortunate to have a lot of family support over the years, especially since my children were very young when I became seriously ill. It has not been an easy journey for any of my family, but we remained hopeful, optimistic, courageous, educated, etc. and continued to persevere throughout.