What to Know
- Hunter Syndrome is a debilitating and eventually deadly disease as the body doesn’t produce a particular enzyme to act as a recycling center
- It turns into a childhood Alzheimer’s. At one point, they can’t even recognize their own parents.
Sebastian Estevez is a charming, funny, energetic 4-year-old boy. At first glance, he looks like your typical little boy. Sebastian, however, has something only about 500 children in the United States have – Hunter Syndrome.
“We hit the lottery from hell” said his father, Mario.
Hunter Syndrome is a debilitating and eventually deadly disease. Sebastian’s body doesn’t produce a particular enzyme that acts as a recycling center. The Broward County boy was normal when he was first born, until symptoms started to sneak up. He now has stiff joints and can’t make a fist.
“Boys with the disease in that latter portions of their lives will lose their ability to walk, talk, eat,” Estevez said.
It turns into a childhood Alzheimer’s. At one point, they can’t even recognize their own parents. It’s a reality Mario and Jennifer Estevez live with every day and a fear of losing Sebastian before the age of 18.
Most of the children diagnosed with Hunter Syndrome don’t make it past their teenage years.
“We try to keep it as simple as possible. It’s getting a little more difficult,” responded Mario when asked how they talk with him about his hospital visits and four hour long infusions.
There is hope coming out of Ohio. Researchers at Nationwide Children’s Hospital 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.
“It’s just a matter of money, it’s just a matter of dollars. It’s insane,” said Mario.
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.
“These boys are losing skills, losing abilities with every day that passes so time really is of the essence,” said Jennifer. “So we don’t have time to waste.”
As of Friday morning, the family has raised $20,000. They’re hoping to get 100,000 people to donate $15 in what is being called the ‘15 by 15’ challenge. You can donate at Projectalive.org or text ALIVE to 91999.