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The Heinze Family

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Tim

The father of four kids, including three with NPC, Tim fights for his kids' lives by pursuing cyclodextrin treatment through the Vtesse trial.

Liz

In addition to helping her husband on their dairy farm, Liz fights for the day when cyclodextrin is FDA approved for all kids with NPC.

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Tyler

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.

Serina

Oldest sister Serina does not have NPC but is an NPC carrier. She loves her two younger sisters and helps her parents take care of them.

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Katie

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.

Faith

Youngest daughter Faith was diagnosed with Niemann-Pick Type C in 2004, shortly after she was born. She may use cyclodextrin as the next step in her fight against NPC.

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Family Life

"We try our best to keep life normal, especially for Serina."

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Niemann-Pick Type C

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Without a Treatment: Tyler's NPC Story

Symptoms

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.

Diagnostic Odyssey

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.

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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.

Current Treatment

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.

Current Condition

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.

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NPC Carrier: Serina

Being a Sibling

Serina loves being with her sisters and enjoys the close relationships they share.

Helping Out

While her parents work on the family dairy farm, Serina helps take care of her sisters and plays games with them.

Giving Medical Care

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.

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NPC Parents: A Long Road

"There's so many other families that are out there for you...Lean on each other."

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Cyclodextrin

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Vtesse Phase II/III Trial

Pursuing Cyclodextrin

The Heinzes seek to get Katie and Faith into the Vtesse trial in order to fight NPC using cyclodextrin.

Not FDA Approved

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.