Everyone Should Read This Girl’s School Assignment About Rare Disease
One child’s homework assignment puts into perspective her mother’s rare disease journey.
Tara Notrica, 51, from Merrick, New York, has a rare disorder called mast cell disease. Her 10-year journey with her condition has not been an easy one, especially because she’s had to work through many years of misdiagnosis and then balance treatment and recovery with caring for her two children.
Her children, Notrica says, have witnessed a lot of her challenges. In June, a writing assignment her 11-year-old daughter Samantha did for her fifth grade class made Notrica realize just how much her disorder has shaped her children’s experiences.
Samantha’s end-of-the-year writing assignment was to write about something she is knowledgeable about. Samantha wrote about her mother’s illness and how she dislikes the stigma often associated with it.
Her assignment read:
I feel strong about this topic because my mom is fighting a rare disease. Since [she’s] been dealing with it since I was 2, I have a lot of background knowledge. For example, with my mom’s health issue I had to learn how to dial 911 before I learned to dial my home phone number. I hear people talk and make fun of bald people a lot and to me it’s very hard to not get upset because I can just imagine how my mom feels. When my mom was at her sickest point she was 100 pounds on a feeding tube and getting close to dying.
Sometimes I see people backing away from the ill and just making jokes out of it but if you were in my place, you would want people to stand by you and be supportive. So what I am trying to explain is that people should [blank] people and not dislike them for what they look like. My mom might [blank] different, but she is just as amazing as anyone and as brave.
Notrica’s disease left her bald and ultimately reliant on a feeding tube for nutrients — at one point, she weighted only 100 pounds. It was a challenge for her to manage researching her condition, traveling the country in search of a proper diagnosis and raising her children.
“My kids witnessed all of that,” Notrica told The Mighty. “My kids have seen so much and been such an integral part of my battle… When she came home with the writing piece, [I] just got flooded with emotions. I was really happy that she felt strong enough about it to share, but a little brokenhearted at the same time.”
During the early years of Notrica’s diagnosis she had to be on a feeding tube for up to 12 hours a day. At this time, her children were young and had no way to get to their elementary school. Notrica’s home was just outside the district’s zone for school bus pickup, her husband had to work full time, and she was too ill to walk them the half-mile to school. This meant her family had to hire a private school bus for a while — an added expense on their serious financial strain from mounting medical bills.
Eventually she was able to convince the district to include her kids in the bus route, but it was an ordeal Notrica hopes other parents in a similar situation won’t have to go through. Since 2011 she’s been advocating for the passage of a school bus transportation bill that would ensure that.
The New York state bill would make it so children living within a designated area not zoned for school bus transportation who have an ill parent can be considered for school bus transportation.
“We aren’t the only families who have been through this and we feel this has to happen going forward for other children,” Notrica told The Mighty. “If the situation is extenuating, parents need some sort of tool so it won’t cost them hundreds of dollars every month to [send their kids to school] privately.”
Notrica is asking people to help her pressure the governor into signing the legislation into law. Go here for more information on the bill, or to sign the petition.