The Heinze Family
Tyler is the oldest of the four Heinze children. He was also their first child to be diagnosed with Niemann-Pick Type C, at the age of five and a half. With few treatment options available to the family, he passed away when he was 8 years old.
Katie, the older of two NPC sisters, was diagnosed with Niemann-Pick Type C when she was about 3 years old. She is fighting NPC without cyclodextrin for now.
Niemann-Pick Type C
Without a Treatment: Tyler's NPC Story
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.
NPC Sisters: Katie and Faith
Testing for NPC
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.
NPC Carrier: Serina
While her parents work on the family dairy farm, Serina helps take care of her sisters and plays games with them.
Vtesse Phase II/III Trial
The Heinzes seek to get Katie and Faith into the Vtesse trial in order to fight NPC using cyclodextrin.