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SWFL family working with FGCU to cure Hunter Syndrome

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A group in Southwest Florida is working to cure a deadly disease.

Hunter Syndrome is rare, only 500 boys in the United States have it. But this deadly disease is devastating for families affected.

“I had to pull over. I was just screaming over and over again, ‘no!'” said Mario Estevez, whose son was diagnosed with Hunter Syndrome. “I couldn’t believe he had it.”

Estevez’s son, Sebastian, looks like a normal boy but is living with a disease so rare that only 2500 people worldwide have it.

“We spend the first six months, I would say, grieving him as if he were already gone,” said Estevez.

Hunter Syndrome is a progressive disease that affects how cells get rid of waste. The disease is only found in boys

And those who have the disease don’t live past their teenage years.

“I realized that I couldn’t see Sebastian as a young man,” his father said.

But Mario Estevez has hope thanks to a group at Florida Gulf Coast University.

“We’ll stop when every boy has a way to survive the disease,” said Courtney Dwyer-Satkoski, an FGCU professor.

Dwyer-Satkoski is leading the group, Hunting for a Cure.

“There are so few patients with this disease. There really isn’t the advocacy and fund raising, so ‘big pharm’ won’t get on board.”

But awareness and money are what they are working to raise.

Luisa Rodriguez is one of the students who is helping.

“I was in class. I teared up. I started crying,” Rodriguez said. “It touched my heart. I said I found what I wanted to do in life and contribute to with all of my heart.”

In partnering with Mario’s organization, Project Alive, they hope to raise enough money for the first clinical trial that could lead to a cure.

“Although it’s burdensome, I’m happy that I have this goal that I’m after.”

The group needs to raise $750,000 to reach their goal. They hope to start the trial at the beginning of next year.

To donate and learn more about the disease, you can visit the Project Alive website as well as the Hunting for a Cure website.