One Family Loses Two Kids To Rare Disease
CHICAGO (CBS) - One family lost two kids to a rare disease.
CBS 2's Brad Edwards reports on the remarkable strides made, in light of that family's unimaginable sacrifice.
"She was twelve. That's when it hits you that she's really gone," said Tracy VanHoutan, the children's father.
Laine VanHoutan and her brother, Noah, died of Batten disease around their twelfth birthdays.
Batten disease is genetic. It's like giving Alzheimer's and ALS to a three year old.
The Vanhoutan's and others have spearheaded game changers.
"Kids are getting diagnosed earlier and can actually go to a doctor and say 'Is there a treatment?' and a doctor can finally say 'yes,'" said VanHoutan.
New findings were just published in the New England Journal of Medicine and approved by the FDA. The upper line shows kids getting treatment are not only not getting worse, they might be showing improvements.
"It really is the holy grail of drug development to see and effect like that," said Vanhoutan.
It was too late for his two children, Noah and Laine. Laine died two weeks ago at home.
The VanHoutan family holds a 5K run and walk that benefits their charity. The event will take place in Downers Grove on May 20th.