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Whether she’s recruiting allies in the fight against ALS or urging friends to let loose and unwind, Desi does it with warmth and wit. As hard as she works, she also loves reading novels, watching reality TV, and dropping gifts for friends in digital shopping baskets. Prior to her battle with amyotrophic lateral sclerosis (ALS), she worked at a luxury hotel, basked in her city’s nightlife scene, and travelled the world with her husband Paul. Today, she balances being a mom to her daughter Birdie with heading partnerships at Her ALS Story, an organization of young women fighting ALS and the stereotypes that come with it. Despite the difficulties of living with the disease, Desi maintains a packed schedule. She uses a speech-generating device called TD I-Series for both everyday conversations and virtual communication.
“Working on partnerships [at Her ALS Story] has helped me re-find my self-worth. Being productive with a task that is outside being a mom and an everyday routine is satisfying and crucial to my self-esteem.”
— Desi Kessler
Desi’s ALS symptoms began at age 28, during the third trimester of her pregnancy with Birdie. As she experienced stiffness in her hand, her doctors believed she either had carpel tunnel syndrome or that her baby was sitting on a nerve. After Birdie was born, her symptoms persisted. She saw a hand specialist, who immediately sent her to a neurologist for an electromyography (EMG). While she waited for a diagnosis over the next few months, she poured her energy into taking care of her baby. Even as it became difficult to button onesies, Desi avoided researching her symptoms. It was not until five months after that first EMG that her doctor concluded that she had ALS.
Navigating the disease while caring for an infant was difficult emotionally as well as physically. Desi lost the ability to walk 18 months after her diagnosis. At 24 months, she could no longer talk. Now, she uses a power wheelchair to move around. Desi’s husband, mom, sister, and in-laws support her with cooking, transportation, administrative work and care. The members of Her ALS Story have also been instrumental in her emotional well-being as she fights for a cure.
Thanks to a proactive care team, Desi started using assistive communication a year into her ALS diagnosis. As a result, she was already comfortable with the Communicator 5 app, which enables text to speech conversion via eye control, before she lost her voice.
The app is now instrumental in Desi’s everyday communication, whether she’s teasing Paul, calling Birdie downstairs, or firing off emails to potential business partners. Originally from Peru, Desi’s family speaks Spanish, so Desi switches between English and Spanish digital voices. Her favorite feature of her TD I-Series is the calendar she relies on to keep track of their lives, from Birdie’s after school activities and parties to her own meetings and events for Her ALS Story.
Despite their full schedules, Desi and Paul still find time to connect with each other. She has the power to control movies, music and lighting with her device to create the perfect mood. For a personality as big and bright as Desi’s, self-expression is a necessity. She enlivens conversation, fuels celebration and defies every stereotype about amyotrophic lateral sclerosis.
Founded in 2021, Her ALS Story (HAS) is a dynamic group of women that raises awareness about amyotrophic lateral sclerosis and its impact on young women. An ALS diagnosis can feel isolating. HAS provides a community where women living with the disease can find camaraderie and support. Using their stories, HAS members advocate for better therapies and push for a cure for ALS in partnership with other organizations that are fighting for the same. Desi is head of Partnerships at HAS.
ALS stands for amyotrophic lateral sclerosis. Also called motor neuron disease or Lou Gehrig’s Disease, ALS causes the brain to stop communicating with the muscles, eventually resulting in complete paralysis. Early signs of ALS include muscle twitching and weakness, trouble walking and slurred speech. Most people with ALS eventually lose their voice. Some rely on assistive communication to continue to express themselves and connect with the world. Though people tend to associate the disease with older males, ALS can affect anyone at any age. While ALS treatment continues to improve there is currently no cure for ALS.
