It wasn't until Tyler had trouble walking that Tim and Liz realized something might be wrong. With few treatments available, Tyler's NPC progressed quickly and included symptoms such as ataxia, seizures and difficulty swallowing.
It took about 3 years of seeing doctors and testing before Tyler was officially diagnosed with Niemann-Pick Type C by Dr. Michael Nigro at the Michigan Institute for Neurological Disorders.
Liz was pregnant with Faith when she and Tim learned of Tyler's NPC diagnosis. Within a few months of Faith's birth, they tested all of their children for NPC.
The Heinzes were able to get Zavesca (miglustat) prescribed off-label for their daughters in 2006, but they continue to seek a treatment that will give Katie and Faith the best quality of life.
Katie can barely walk or talk now, and Faith can only walk and talk a little bit, yet they love being with people and are happy to do what they can still do.
Because Serina has been around NPC since she was a toddler, helping Katie and Faith with medical care - such as using a feeding tube - is normal for her.
Tim and Liz want to help their daughters live longer and healthier lives. They also want to get cyclodextrin approved by the FDA in order to help all people with NPC.
