Scarsdale family races against time to help find cure for son's rare disease
A family in Westchester is racing against time to find a cure for their son's rare, life-threatening disease.
Hunter Schultz was diagnosed with CMT 4B3 when he was 2-year-old. Now at age 4, there's an unclear picure at what his future might look like.
"We're just really lucky to have the time we have with him now," said Iris Schultz, Hunter's mother. "We want to spend every second with him now because we don't know if he'll be the same child in 10 years."
That uncertainty prompted his parents, Iris and Brett, to start the Hunter's CMT4B3 Research Foundation. They put together their own scientific team of experts from around the country and made it their full-time jobs to find a cure in Hunter's lifetime.
Hunter is one in 17 in the world to have been diagnosed with CMT 4B3.
"These are patients that are quadriplegic, that suffer severe mental retardation, that just don't line up with our little boy who's playing with his cars downstairs," said Schultz.
The Schultzes have been told there is no treatment, no cure and that no one is actively researching the disease. But they won't take that for an answer.
"How do you not help your own kid?" she asked. "We know we're going to develop something, it's just—are we going to develop it in time to save Hunter?"
Along with the foundation, the Schultzes started the "We Stand With Hunter" campaign, which is looking to hit their $1 million goal by the end of the year.
"We just want to be able to tell him, we did everything we possibly could," said Schultz.
Through fundraising events and through social media posts, they're asking their community to help their mission.