■ Lilly Grossman hopes to help others with disabilities through her video
By Catherine Ivey LeeWhile her fellow classmates were experiencing a rare torrential downpour last month, one La Jolla High School junior was having a rare experience of an entirely different kind several times zones away: being recognized at the White House’s inaugural Student Film Festival.
Lilly Grossman, 17, received an honorable mention for her video entry on the use of technology at school, the festival’s topic. The issue is dear to the La Jolla teen, who suffers from a mysterious illness that prevents her from walking and makes speaking difficult, and who relies on technology in many ways. More than 2,500 students from kindergarten to high school entered the competition.
At the Feb. 28 event, Lilly and other student filmmakers were treated to a private meeting with President Barack Obama, who encouraged the group to continue to embrace technology and spoke of the need to increase technology access to all American students. They also attended an Oscar-like celebration that included red carpet interviews by Neil deGrasse Tyson (host of TV’s “Cosmos”) and Bill Nye the Science Guy, and a screening of some of the films on giant screens set up in the East Room.
It was a thrilling experience for Lilly and her parents, Steve and Gay, who accompanied her on the trip. While Lilly’s film was not aired, she appeared in a montage of the winning films. And for her, the day produced its own highlight reel.
“My top three highlights were being able to ride in President Obama’s elevator that he rides every day to go to work, having the President grin at me when he came in, and seeing the other students’ videos,” Lilly recalled.
Unlike some of the filmmakers, who used technology to document school gun violence or to produce new robots, Lilly’s use of technology is not an extracurricular activity. Since her earliest months, she has suffered from an undiagnosed condition marked by weak muscles and poor balance that affects her ability to move easily, including to walk. She has difficulty writing. For much of her life, shehas been awakened by powerful seizure-like tremors, up to 30 a night. The fits sap her limited energy and leave her exhausted.
Lilly’s physical disabilities make life — and school — a challenge. Yet, with the right technology, she has been able to communicate more effectively and to demonstrate her cognitive abilities, which are unaffected by her illness. It has also enabled her to attend her local high school and to experience school in the same way as other students.
In the two-and-a-half-minute video she filmed with help from friends, Lilly offers a simple look at her tech lifelines. She is seen with her laptop on which she takes notes, corresponds with teachers and uses specialized software to do math.
The film shows how technology literally moves her: Lilly travels to school in her family’s wheelchair-accessible van and navigates around campus in a motorized chair. In one scene, Lilly uses FaceTime, live video communication that enables her to connect with the classroom on days she’s too ill to attend in person. In another, Lilly keeps up with friends through texting and social media sites.
Via e-mail, the honors student explained why she entered the contest.
“Throughout the filming of the video, I just thought that I’m doing this for the boy or girl who needs special computer software or FaceTime for when they’re home sick from school,” she wrote.
“I want to help them because neither I nor my parents had any guidance on what math software to have me use and it’s extremely time consuming to find just the right type. I want to minimize the time spent searching so they can just focus on learning and doing well in school.”
Despite her illness, Lilly refuses to be defined by it. She appears just too busy. The White House recognition is just the latest of a string of accomplishments and good news. She is an editor at her school newspaper and last fall was crowned her class’s homecoming princess.
An aspiring writer, Lilly self-published a novel through Amazon.com last fall. “The Girl They Thought They Never Knew” tells the story of a girl who miraculously recovers from a prolonged illness. She has even written an op-ed for the La Jolla Light newspaper about the need to improve handicap access at La Jolla High School, an issue that she’s been working on for a year, and for which she’ll soon receive the Girl Scouts’ top award. She is a National Charity League member and recently began an internship at the biotech company Illumina.
Progress has also been made in understanding her illness. In 2012, Lilly’s entire genome was sequenced and analyzed as part of a study at the Scripps Translational Science Institute. The testing revealed two rare genetic mutations, one responsible for her tremors, the other for her muscle weakness. Lilly’s medical team is using the information to change her treatment. Her night tremors have partially subsided; she currently wakes up only several times a night.
The best news from the analysis was the conclusion that Lilly could have a normal life expectancy. Lilly has begun to look at colleges in the UC system and hopes to find a place where she can transition to a life that will be as independent as possible.
Over the past year, the Grossmans have shared Lilly’s unique story in hopes of inspiring others whose conditions elude diagnosis. Lilly has been featured in national publications, on television, at genomics conferences, and in a book and a documentary about rare diseases.
The stories serve another purpose of equal importance to Lilly’s parents, who have been her tireless advocates and champions for 17 years. “They let people know that Lilly is actually a productive member of society,” Gay said.
Lilly’s White House video, which can be viewed online, is set to a song called “Hall of Fame.” It’s an inspiring tune with lyrics that urge listeners not to wait for luck to find them but to strive to be the best they can be now. One day, it asserts, hard work will bring recognition.
The message was not lost on Lilly’s family and friends who posted their support online.
“Lilly!” wrote one. “You are amazing and you are in the Hall of Fame.”
Watch the video
■ ‘How I Use Technology in School’ by Lilly Grossman: