A South Florida couple is hoping to raise funds and awareness about Hunter Syndrome -- a deadly disease that their 4-year-old son is currently fighting.
Hunter Syndrome is a debilitating, deadly disease. The young Broward County boy, Sebastian Estevez, doesn’t produce a particular enzyme that acts as a recycling center. According to a report by NBC, Sebastian now has stiff joints and can’t even make a fist.
Only about 500 children in the world suffer from Hunter Syndrome.
The disease turns into a form childhood Alzheimer’s. At one point, the impacted children may not even be able to recognize their own parents.
Most of the children diagnosed with Hunter Syndrome don’t make it past their teenage years. t’s a reality that Sebastian's parents, Mario and Jennifer Estevez, live with everyday.
Still, there is hope.
Researchers at Nationwide Children’s Hospital in Ohio have figured out a cause and a cure. They are ready to go to clinical trials – however, because it’s so rare, there is little funding.
So, for the past year, The Estevez family has banded together with other parents of Hunter Syndrome to form "Project Alive." Their goal is to keep their children alive and they need to raise $1.5 million by May 15th. They're overall goal is $2.5 million, according to a GoFundMe page.
They’re hoping to get 100,000 people to donate $15 in what is being called the ‘15 by 15’ challenge. So far, they have raised over $1.2 million overall.
You can donate at Projectalive.org or text ALIVE to 91999.
For more information, click here.