(CBS) – It’s been almost a decade since one suburban family began pushing to get the first ever treatment for Batten Disease approved.
Thursday, it paid off.
Two of Tracy and Jen Vanhouten’s children were diagnosed with the disease. Their son, Noah, died last year, but they kept fighting.
The Vanhoutens originally planned to release a balloon on what would have been their son Noah’s 13th birthday. Instead they did it Thursday, in celebration that approval was given to an enzyme replacement therapy.
The approval comes too late for their daughter, Lane, but just in time to help thousands of other children.
“Knowing families don’t have to watch their children have this devastating decline is more comfort than I can explain,” Jen says.
It’s why Tracy fought so long, traveling the globe, pushing for the treatment’s approval — even as the window to help his children closed.
Lane is now 11 and has a fraternal twin who does not have Batten Disease, which is passed on from parents.
The family’s foundation Noah’s Hope, along with partner foundation Hope 4 Bridget may now start fighting for a cure.