Our Family's Niemann-Pick Type C (NPC) Journey

By Cindy Kay Zimmerman

We will always cherish the 6,070 days that we had with our only son, Patrick, before God called him home. Our family’s NPC journey began when I received a phone call stating that Patrick’s amniocentesis showed something unusual. Our doctor did not know what it was. I hung up the phone and sagged against the cold, cinderblock wall that afternoon, taking in the enormity of what that might mean for our future. My husband and I were not walking closely with the Lord. Our marriage was not strong at all. But ending the pregnancy was not an option we considered, despite not knowing what the future held for us.


When I received the news that day, I could not even begin to fathom the odyssey that God would send us on during Patrick’s short time here on Earth with us. When Patrick was born a month early, he appeared perfectly healthy. He hit all his milestones. NPC gradually stole Patrick’s ability to think, walk, and talk. Eventually, we learned that Patrick had a rare genetic condition that he had inherited from both of us. It was called Niemann-Pick Type C (NPC) disease. NPC is a cruel, relentless foe that slowly attacks the brain, the spleen, and the liver. It has been called Childhood Alzheimer’s, since some of the symptoms can mimic Alzheimer’s disease.


Patrick was a precious gift from God who changed our lives forever.

Lydia Lightner, a sweet sister in Christ, asked me a pointed question after Patrick died. “Where would you be in your walk with the Lord if you had been given the life YOU wanted,” she asked. It was a good question. God was incredibly faithful to us throughout our NPC journey. He led us to our loving church family at Parker Evangelical Presbyterian Church. Pastor Gary McCusker shepherded our family through the valley of the shadow of death. While meeting with Pastor Gary, Patrick accepted Christ just a year and a half before he died. Our sweet little boy’s childlike faith brought both my husband and I back to our faith in Jesus Christ. His joy and unwavering faith inspired many others to examine their own faith and reinforced their hope in heaven.


Our family’s NPC journey was, at times, excruciating, and now that Patrick is in heaven, there are times when I still wrestle with God. To be honest, I don’t like the plan He has for our lives, but I am slowly learning to accept it. I don’t understand why I couldn’t have a “normal” childhood followed by a “typical” marriage with lots of kids and grandkids. Those things haven’t been in God’s plan for me. I will have lots of questions to ask God, when He finally calls me home. After I fall down in worship, I’ll ask Him to please show me all the ways Patrick’s short life impacted the lives of others, like ripples in a pond.


Steve and Cindy Zimmerman serve as Stephen Ministers and GriefShare Failitators at Parker Evangelical Presbyterian Church. God is using the pain we experienced to help others who are suffering (2 Corinthians 1:4). If you would like to read more of our family’s story, Home Runs for Heaven, A Story of God’s Faithfulness Told in Two Voices, by Pastor Gary McCusker and Cindy Kay Zimmermann, is available to order online through Amazon, Barnes and Noble, Target, and Walmart.

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