MILWAUKEE — A local school dedicated its baseball field in honor of two children who died after being diagnosed with a rare disease.
On Saturday, TMJ4 News was there as the University School of Milwaukee (USM) renamed its baseball field Bridger and Essex Grebe Field.
Both passed away, in 2010 and 2015 respectively, after being diagnosed with Infantile Neuroaxonal Dystrophy (INAD). INAD is a rare, inherited neurological disorder that causes progressive loss of vision, muscular control, and mental skills.
"When our sons were first diagnosed, we didn't know what it was," said Kelly Grebe.
For the past 14 years, Michael and Kelly Grebe, the parents of Bridger and Essex, have been raising money to fund the search for a cure by hosting an annual charity softball tournament. To date, the family has raised nearly $800,000 to help fund the search for a cure for INAD, which affects roughly just 150 kids worldwide.
"The more people that we can make aware of this rare disease, the more hope we have of finding someone who wants to step up and fund a cure," said Kelly Grebe.
While no cure has been identified yet, researchers are working towards starting gene therapy trials. That progress has inspired many who have joined the Gebe's on the quest for a cure.
Watch: Milwaukee school honors local family after tragic loss
"They've been doing a softball event for several years and we wanted them to come home here to USM," said Steve Hancock, USM's Head of Schools. He spoke Saturday at the unveiling of Bridger and Essex Grebe Field. "It's not just Grebe Field because we want people to remember Bridger and Essex. We want them to know what they went through, the disease that they fought and our hope for a cure and so by having their name on the field for everyone to see, we're hoping that for generations in the future, we'll be able to tell this story for them."
It's an extra special moment for the Grebes. Their family has attended the institution for generations and Michael and their two sons, Griffin and Tripp, have been part of the USM baseball team.
"University School and the baseball program mean an awful lot to me, to our sons, to our family and to have Bridger and Essex recognized this way means an awful lot to me and I hope it can mean something to the kids who can look up and there and see their names up there for years to come," said Michael Grebe.
A home run for a family fighting for a cure.
To learn more about the Bridger & Essex Grebe Fund and the race to fund and find a cure for INAD, click here.
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