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Johnathan, age 11

Gilroy, CA

Johnathan Spencer was born on March 25, 2006. While he appeared quite healthy at birth, within a few days he was fighting for his life. His liver and spleen were greatly enlarged. Over the next month, his tiny body underwent numerous blood transfusions, picc line attempts, a spinal tap, blood draws and other invasive testing. Yet there were no answers to his medical questions. He recovered from that scare, and he and his family went on with their lives. Multiple doctors visits over the next three years gave no answers.

But on March 9, 2010, the answer came to his parents, (Rebecca and Keith) in one terrifying statement. Johnathan has Niemann Pick Type C (NPC).


In January  of 2014 he started a phase one trial at the NIH. He along with his parents,  step parents  and baby brother James traveled over 2000 miles every 3 weeks for two years to get spinal infusions of VTS270. Now Johnathan get his infusions every other week at UCSF Children's Hospital which is closer to home in San Francisco, CA. 

Johnathan is now 11 years old, while he has symptoms of NPC, we are still able to keep him healthy and happy.  Johnathan loves to do plays and enjoys playing xbox with his friends. Unfortunately, unless something new is found he will deteriorate. 

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