Ella Gaspard was born on the island of St. Thomas and like many on the island, Ella loves eating mangoes and going to the beach. But to the best of her parents’ knowledge she is the only person in the V.I. who has been diagnosed with the rare condition known at Rett syndrome.
Her parents, Shaine and Lauren Gaspard, established Ella’s Hope, Inc. in 2018 as a nonprofit with a mission to raise awareness about Rett syndrome and raise funds for a cure. All fundraising efforts go towards research, Shaine Gaspard said.
“350,000 precious little girls and women suffer from Rett syndrome globally. We know of no other Rett syndrome diagnosis in the US Virgin Islands,” he said. “That is why our campaign for awareness is so critical. Someone in our community may have a child that is misdiagnosed, like Ella was, and is not receiving the full and proper care needed to support these angels.”
Gaspard explained how his family’s initial concern was a misdiagnosis. Ella was tested for Rett syndrome and her results were negative, but later the results were determined to be a false negative.
“As parents, we knew her symptoms were much more complex than a simple autism diagnosis,” he said. “Ella was born a normal, happy, healthy little girl. She was playing with her toys, talking, exploring the world around her. At about 18 months, that all stopped. She lost her ability to speak and quickly all purposeful use of both her hands. She now often needs assistance walking.”
But the Gaspards are hopeful for a cure. Shaine Gaspard said Rett syndrome has been successfully reversed with animal subjects in a lab and the singular gene responsible for the syndrome has been narrowed down. “This gene provides instructions for making the protein MeCP2, which is critical for normal brain function. The lack of this protein causes devastating disabilities such as cerebral palsy, epilepsy, Parkinson’s, autism, severe anxiety,” he said.
Gaspard said the syndrome is not a genetic condition and occurs randomly across all ethnic groups. He also said the gene that causes Rett syndrome is located on the X chromosome, more commonly on the second X chromosome of females, which is why the condition is generally found in women.
In order to achieve a cure, Gaspard believes awareness is the key. “We believe that awareness is the spark that lights the fire to a cure. Many people had never heard of Rett syndrome until we began our foundation. We have learned through this process that when you meet Ella and learn about her journey for a cure, the fundraising comes organically,” he said.
To date, Ella’s Hope has had several successful fundraising events. Locally, the Gaspards put together the 5K Run for Rett, and Ella’s Hope has achieved global fundraising from the United States, Ireland, England, the Netherlands and Australia.
Ella Gaspard has even been the subject of a heartfelt song performed by a London band, The Luck, which released the song on Ella’s fifth birthday.
The nonprofit’s next fundraiser is Ella’s Hope Cook for a Cure, which will take place on St. Thomas on July 13 at the Crown Bay dock from 12-4 p.m.
The event features grilled cheese and Shaine Gaspard said everyone is invited, encouraging restaurants and other local businesses to come out and compete.
“St. Thomas is known for summer culinary cook-offs that benefit many great causes. We wanted to add our own flavor to the summer. We are accepting participants and the forms are available online at our website www.ellas-hope.org,” Gaspard said. Corporate sponsors and competitors should contact Lauren at firstname.lastname@example.org
100 percent of all funds raised goes to finding a cure to ensure “all little girls with Rett syndrome live a life full of recovery, joy, and contribution,” Gaspard said.