PLANTATION, Fla. – The American Heritage School let their teacher Jennifer Estevez know that she and her family are not alone in their fight against Hunter syndrome, the rare disease that is threatening to kill her son.
Three-year-old Sebastian Estevez is one of about 500 children who inherited the genetic disorder. It is diagnosed in children as young as 18 months. Most of the patients are boys.
A missing or malfunctioning enzyme causes a buildup of harmful substances that can result in disabilities and affect organ function. Researchers haven't found a cure yet.
Sebastian's dad, Mario Estevez, hopes his son will be able to have access a human clinical trial for gene therapy. Two other boys, Michael Pleffner and Kalel Anya, who were diagnosed with the same rare disease joined the school's pep rally on Thursday in Plantation.
The pep rally was the end of an effort to raise thousands. For about a week, the school worked to leave their mark on The Project Alive campaign, which has been raising awareness and funds for Saving Case & Friends, a foundation focused on fighting Hunter syndrome.
For more information or to donate, visit ProjectAlive.org or text the word "ALIVE" to 91999.
As Project Alive week winds to a close, Junior High and select Upper School students take part in a pep rally for...
Posted by Patriot Post on Thursday, April 6, 2017