It’s not often that children can inspire legislators and help to pass laws, yet junior Alysssa Temkin did so at the age of six. Bill 369 was passed to “permit students who require tube feedings to attend public and nonpublic schools while accompanied by a person who is trained in the administration of the tube feeding and who administers the tube feeding pursuant to the written order of a licensed health care provider.” The passing of this bill was thanks to the advocacy of junior Alyssa Temkin who, along with family and friends, inspired legislators to sign the bill.
Alyssa has glycogen storage disease (GSD) type 1a meaning that she lacks the liver enzyme needed to convert glycogen, the stored form of sugar, into the usable form, glucose. This means that her blood sugars can drop to dangerously low levels, so she needs to test her blood sugar and drink Tolerex every 90 minutes to stay healthy.
The passing of Bill 369 has granted Alyssa more medical freedom. “Connecticut state law required that only a registered nurse was permitted to administer my tests and feeds during the school day,” Alyssa said. “The law was changed to permit caregivers other than registered nurses to take care of me and any other children with similar health conditions.”
When Alyssa was younger, she was unable to test her blood sugars herself, so she required someone to be at school with her each day, often her mom or caregiver. Her parents were surprised that Connecticut state law required a registered nurse to do these tasks rather than a trained caregiver who Alyssa was comfortable with. Alyssa’s family was motivated to make a change, so they each personally testified in front of state legislators on Alyssa’s behalf to pass Bill 369 on March 11, 2011. At the court hearing, Representative Brian Becker read aloud Alyssa’s testimony written from her perspective. Many of their friends joined them to testify as well, including Alyssa’s nanny, babysitter, and the school counselor at her elementary school.
At the court hearing, Alyssa’s family argued that requiring the nurse to take care of Alyssa jeopardized the health and safety of other students. If Alyssa needed medical attention at the same time as another student, the nurse would need to make a decision that could result in a seizure for Alyssa if she was not cared for or a serious injury for the other student. “We need somebody who we know at that 90-minute mark is going to be available for Alyssa,” Alyssa’s dad argued at the hearing.
The family also had the support of many other families who were suffering a similar fate, some of whom came to testify alongside the Temkins. Alyssa always knew that Bill 369 would impact the lives of so many others like her. “I hope you will vote in favor of this Bill number 369,” Representative Baker said, quoting from Alyssa’s script when he addressed the legislators. “This will also let other boys and girls go to school and just be regular kids like me.”
To this day, Alyssa recognizes the impact this special experience had on her. “This process instilled in me at a very young age an understanding that any individual has the ability and responsibility to cause change,” she said. “This is the mentality that I approach my life with, especially my education. This life experience provided me with the foundation of my personality to never give up and fight for what you believe in.”
Alyssa has since taken two Medical Problem Solving GOA classes and has realized she wants to see more changes to our healthcare system. “I want healthcare to become more accessible to everyone,” she said. “After taking my GOA course and learning about the different care people receive due to their financial status and race, it was so shocking and sad to me. Everyone deserves the same care and treatment no matter who you are.”
