PLANTATION (CBSMiami) – Hundreds of students and staff from American Heritage School came together Thursday to help a young boy suffering from an incurable and extremely rare disease that’ll likely kill him by the time he’s a teenager.
It’s called Hunter’s Syndrome, and little Sebastian Estevez, only 3-years-old, is one of about 500 boys nationwide with the genetic disorder.
“It was soul shattering news,” explained Sebastian’s dad Mario when he recalled the day his son was diagnosed.
When a child has Hunter’s Syndrome, it means his body lacks the enzyme that breaks down sugar molecules. It causes progressive damage to the organs, bones, joints, airways, and in most cases, the brain. Children with the disease seldom live to adulthood.
“To have to deal with the prospect of having to bury your own child is something that I could never really probably fully explain,” said Mario. “And it’s not really the idea of having to bury your own child, it’s having to watch your child, who is a young, beautiful, bright boy; break down before you to where he’s not even recognizable because there are deformities associated with Hunter’s Syndrome.”
Mario explained there are physical deformities. “All Hunters boys’ kind of look alike and to watch your son break down before you and be helpless in that regard, it was paralyzing for the first 6 months. I was going through the motions and I found myself trying not to grieve a life not yet lost. It was unbearable, it was really unbearable.”
But there is a hope.
Trials of a new treatment, believed to be capable of reversing some of the damage the disease does, are ready for human testing. But the cost is high.
“Project Alive is run by parents all over the country to fund research for gene therapy,” explained Jennifer Estevez, Sebastian’s mother.
“Our goal is to raise the money needed to save our kids. It’s $2.5 million that we need, which seems like a lot for any one of us, but we are hoping that people will hear our story and support us and save our boys.”
Support is what they are getting at American Heritage where Jennifer is a teacher and Sebastian will enter pre-K next year.
Students and teachers dedicated the past week, called Project Alive Save Sebastian Week, to help fundraise for the trials.
“They are ready to go to human trials,” explained Jennifer. “Because it’s such a weird disease, there aren’t any pharmaceutical companies doing this research so we are tasked with raising the money on our own. The doctors are ready, they just need the money.”
Wednesday, every student in every English class at the school wrote a letter to Ellen DeGeneres in an effort to get national attention, that’s about 2,000 letters.
Thursday, the school held a pep rally.
“The rally is a support rally to get the whole junior high together to just be able to meet Sebastian but also show their love and for us to thank them for all of their support,” said Jennifer. “I knew I was part of a special community but I don’t think I realized just how special.”
Sebastian isn’t the only child in South Florida with Hunter’s Syndrome. There are two other cases here including a boy in Hollywood and another in Cooper City. Both of those children, joined Sebastian at Thursday’s pep rally.
Here’s a video about Sebastian.
A video for the nationwide fundraising campaign can be viewed here.
The national video, created by a documentary filmmaker, is based on the concept of what children want to be when they grow up. The kids in the video dress up as doctors, athletes, police officers, and firemen.
Little Sebastian dressed up as a veterinarian for Thursday’s pep rally.
If you’d like to donate to Project Alive, CLICK HERE or text the word ALIVE to 91999. Donations will fund the clinical human trials.