It is the first time Rett Syndrome has been singled out for awareness in the U.S. Virgin Islands or any U.S. territory, according to Shaine and Lauren Gaspard, the founders of the organization Ella’s Hope, named for their daughter who they learned has the rare genetic disorder.
The disorder is rare, and as a result when it does present itself it is often misdiagnosed, Lauren Gaspard said.
“Imagine a disorder that is autism, Parkinson’s disease, cerebral palsy, anxiety disorders and epilepsy … all in one little girl, that is Rett Syndrome,” she said in announcing the proclamation.
“My daughter Ella was born in St. Thomas, USVI, on April 12, 2014. Ella is the only known child in the U.S. Virgin Islands to suffer from this devastating condition. However, the statistics show that one in 10,000 little girls born can have this rare condition. That means, there must be other little girls in our community that have not been properly diagnosed [as Ella was] and are not receiving the proper treatment. That is why our campaign for awareness is so critical,” she said.
With the governor’s signing of the proclamation, the U.S. Virgin Islands joins New Jersey, Ohio, Pennsylvania, Georgia, Arkansas, Arizona and Missouri in recognizing October as Rett Syndrome Awareness Month.
Ella’s Hope is a nonprofit 5013c organization funding research grants for a Rett Syndrome cure.