Amid Tragic Loss, A Family Fights For Cure For Rare Disease
CHICAGO (CBS) -- Thousands of people ran in the Cupcake Classic 5K this past weekend in Downers Grove; it was all for a boy named Noah, and his hope.
CBS 2's Brad Edwards has this Original Report.
Noah VanHoutan died in March, not yet 12 years old, of Batten disease, a rare genetic degenerative neurological disorder.
"It's a universally fatal disease, currently with no approved therapy or cure," said Noah's father, Tracy VanHoutan.
Red ribbons now adorn trees up and down the VanHoutan family's block in Downers Grove. Red was Noah's favorite color.
"It started just with one of our neighbors, and then more and more," Tracy said. "It kind of takes your breath away."
Noah was diagnosed with Batten disease when he was 3 years old. Shortly after his diagnosis, his parents were told the heartbreaking news that their daughter Laine also has it. Fortunately, her twin sister, Emily, does not.
Their parents took that pain, and funded research into Batten disease via Noah's Hope.
Fewer than 450 children in the United States have Batten. Most succumb to the disease between the ages of 8 and 12, but there's stunning new promise in an enzyme replacement therapy, just recently.
"The data was really, really good; better than expected, but it was a pretty bittersweet moment," Tracy said.
It's too late for Noah, and Laine has progressed too far; but the VanHoutans are in contact with other Batten families.
"You want to have the best feeling in your life? You watch what these kids are doing. It's unbelievable, and I suspect even some of the kids might be getting slightly better, which is something we never expected would happen," Tracy said.
That would be Noah's hope.
The treatment therapy is in the final stages of what will hopefully be FDA approval.