First Amazon Alexa Skill Designed to Engage with Those Impacted by Lennox-Gastaut Syndrome – a Rare and Severe Form of Childhood-Onset Epilepsy
Eisai launches “Ella the Jellyfish” Bringing Comfort and Support to Children with LGS, as well as their Families and Caregivers
Eisai Inc., the U.S. subsidiary of Eisai Co., Ltd., today announced the launch of Ella the Jellyfish, the first Amazon Alexa skill designed for those affected by Lennox-Gastaut Syndrome (LGS). The Alexa skill was created with input from children living with LGS, a rare and severe form of childhood-onset epilepsy, their families and caregivers and is provided free of charge.
Featuring capabilities such as interactive play, listening and creative activities, Ella the Jellyfish was designed for easy and seamless daily use on Alexa-enabled devices, including voice assistants, mobile phones and tablets. By simply saying, “Alexa, open Ella the Jellyfish,” families, caregivers and children can instantly and easily interact with Ella and her underwater friends by listening to Ella tell a story, singing a song, listening to a relaxing meditation or playing such games as “Ella Says, Freeze Dance” and “Color Hunt.”
Parents and guardians can enable the Ella the Jellyfish skill by searching for Ella the Jellyfish in the Alexa Skills Store online and through the Alexa app. Once enabled, caregivers and patients can start by telling their Alexa-enabled device to open Ella the Jellyfish. Caregivers and patients can also learn how to operate the skill by watching videos of caregivers and children using Ella the Jellyfish. Those videos can be found at ellathejellyfish.com.
“Having a special-needs child can be isolating and exhausting because it’s so difficult to find help or a community that understands our needs and most of the time we are struggling to just keep our heads above water,” said Kayleigh Keen, a caregiver to a child living with LGS. “When we attended the LGS Foundation conference this year, it was fun to watch my son have the opportunity to sample the skill and see my son’s face light up as he easily interacted with Ella the Jellyfish during several activities.”
LGS is one of the most severe forms of childhood-onset epilepsy and is characterized by multiple seizure types, cognitive impairment or developmental delays and distinct brain electrical patterns. Approximately 70 percent of patients with LGS will show cognitive impairment at diagnosis and more than 50 percent suffer behavioral issues including hyperactivity, sleep disturbances, aggression and autistic symptoms.
“When I treat children with LGS, I am always looking for ways to better help support caregivers and families navigate the daily challenges of taking care of someone with this disease,” said Michael Chez, MD, Pediatric Epileptologist, Sutter Medical Group, Sacramento, CA. “Ella is a wonderful example of how technology can provide a new level of support and compassion.”
Having a child who has LGS can significantly change the family routine and sibling relationships, especially as they get older. The frequent, unpredictable seizures, often associated with falls or injuries, require the child with LGS to have constant supervision. This results in 24-hour-a-day, seven-day-a-week care, often putting a tremendous strain on the marriage and family.
“We are proud supporters of this incredible technology and its ability to bring not only joy but much-needed support to our community,” said Amy Brin, Executive Director/CEO, Child Neurology Foundation.
“Ella the Jellyfish was born out of the countless, heartfelt experiences Eisai employees have had with the LGS community,” said Alexander Scott, Chief Strategy Officer, Neurology Business Group, Eisai Inc. “Staying true to our human health care mission to advance epilepsy care and help address the specific needs of patients and their families is what inspired us to develop Ella. Our goal is to relentlessly break through ordinary approaches so that we may provide innovative solutions that go beyond just the medicine.”
EDITORS NOTE: Click on this link and scroll to the bottom of the page to watch moving videos about the profound personal impact this skill is having on LGS families.