Lilly Grossman, student with rare genome mutation, establishes new safety protocols at school
SAN DIEGO – Lilly Grossman spearheaded and facilitated a sustainable school evacuation plan at La Jolla High School in San Diego using Med Sled® evacuation sleds, requiring students and staff to take training classes as part of their physical education curriculum. Lilly, a high school senior, uses a wheelchair due to a rare genome mutation that went undiagnosed for most of her life, and earned the Girl Scout Gold Award for implementing this project and also published two fictional books about her experiences living with a disability.
“During my sophomore year of high school, I discovered that my school didn’t have a safety plan that incorporated physically disabled students, nor a way to get them off the second floor in an emergency,” said Lilly in a recent essay. “By making this issue my Girl Scout Gold Award project, I helped make my school safer for all its occupants.”
After learning about the administration’s lack of a thorough safety plan, Lilly initiated the process of updating the plan and providing a way to evacuate all students from the second floor during an emergency. To gain support for the project, Lilly worked with the San Diego School District’s accessibility office and the 504 Committee, which oversees accessibility rights for students. Due to Lilly’s efforts, the district chose to purchase Med Sled® evacuation sleds to help evacuate students from the second floor, but Lilly found that no students or faculty were trained to use the devices during an actual emergency. Her solution: provide training in gym classes for the Med Sleds® and ensure their use during every evacuation drill at the school.
Lilly also organized an event called “Day in a Chair” after being referred to the sponsoring organization by a friend. During the event, students at La Jolla High School volunteered to experience being in a wheelchair for an entire day. To be eligible to participate, students first had to be trained to use Med Sleds®. The student body responded positively to the event, and the administration is considering making “Day in a Chair” a yearly event.
“I support the program. The plan is to incorporate training on the use of the sleds into our program each school year and during safety meetings with the staff,” said Chuck Podhorsky, Principal of La Jolla High School. “We will have signage up to indicate the location of each sled, and the sleds will be incorporated into evacuation drills when necessary.”
About Lilly Grossman
Lilly Grossman is a published author and honors student who has struggled for most of her life with an undiagnosed illness causing muscle weakness, tremors and severe sleep deprivation. After undergoing a genome sequencing procedure, Lilly was found to have mutations in two specific genes, ADCY5 and DOCK3. Lilly is a passionate advocate for genome sequencing as well as universal accessibility standards for individuals with disabilities. Lilly has earned a Girl Scout Gold Award for implementing a sustainable evacuation plan at her high school and also published two fictional books about her experiences living with a disability. For more information, email ggrossman@san.rr.com.
Read more about Lilly’s courageous journey by clicking on the links below.
“‘We Gained Hope.’ The Story of Lilly Grossman’s Genome” (National Geographic)
“The search for what’s wrong with Lilly” (The San Diego Union-Tribune)
“Family hopes genome test will help cure girl’s mystery disease” (Los Angeles Times)
“La Jolla teen honored at White House film fest” (La Jolla Light)
“Three La Jollans earn Girl Scout Gold Awards” (La Jolla Light)