Everything was going well in Iris Schultz's first pregnancy until her 20-week ultrasound, when doctors grew concerned about her son's development.
Little Hunter wasn't growing as quickly as other fetuses, but otherwise everything looked fine. When he was born at 37 weeks, he was sent home after just a few days in the NICU. Even though his parents were told he was healthy, deep down, they knew something was wrong.
Soon, Hunter started missing developmental milestones like rolling over and holding his head up. Still unworried, their doctor told Iris and her husband, Brett Schultz, to "consider him like a preemie" and be patient. "He will catch up, don't be concerned," their doctor added.
When he was 2, Iris and Brett enrolled Hunter in early intervention because he still wasn't walking or talking. They also had him genetically tested, which is how they discovered that they'd been right all along.
Hunter has a rare genetic condition that affects just one out of every 2,500 people in the U.S. And Hunter is one out of just 15 other cases of Charcot-Marie-Tooth Disease Type 4B3, or CMT4B3.
This rare progressive neuromuscular disorder currently has no cure or treatments.
"It's similar to Muscular Dystrophy, except instead of attacking the muscles it attacks the nerves, and then the movements slowly get slower and slower and eventually stops, which causes muscle weakness and, eventually paralysis," Iris explained. "Hunter's type is considered Early-Onset Severe CMT."
Without intervention, Hunter will eventually become deaf and blind, and lose all mobility. His parents' minds were boggled when they learned there was no help available for their son. Unwilling to watch him deteriorate, they decided to take action themselves!
Iris and Brett founded a nonprofit called Hunters CMT4B3 Research Foundation to raise money for research. Their ultimate goal is to find a cure, but they're also hoping to find a way to use existing drugs to slow the progress of Hunter's disease and give them more time. Finding treatments for CMT4B3 will not only help those suffering from this disease, but it will also help thousands of other kids who have peripheral nerve diseases.
"We quickly learned that rare disease research is parent-driven, and unless there is a family driving force behind it, with these rare diseases, it just doesn't get done," Iris said.
Hunter is now 4 years old and receives occupational, physical, and speech therapies every day. While he still can't walk or run like other kids, he has an infectious laugh that helps keep his parents inspired to fight for his future. Their goal last year was to raise $1 million to fund research for gene therapy projects and drug repurposing for children suffering from CMT4B3, and they're nowhere near done.
"There's nothing that we won't do for him," Brett said.
This is a face worth fighting for! It's hard to believe there's no cure for this disease yet, but we're certain that if anyone will find one, it will be Hunter's devoted parents!
Share this story to support them as they work to save their child's life.
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