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 many tests. His veins collapsed. And there was no answer to his medical questions. He recovered from that scare, and he and his family went on with their lives. Multiple doctor visits over the next three years gave no answers.
On March 9, 2010, his parents, (Rebecca and Keith), the answer came, in one terrifying statement. Johnathan has Niemann Pick Type C (NPC) a genetic neurodegenerative disease that has no cure or approved treatment and is fatal. Frequently called “Childhood Alzheimer’s”, NPC is a cholesterol buildup in the liver and spleen, that travels to the brain, eventually causing the affected child to lose memory, motor skills, verbal skills, and then death.
So far, Johnathan’s NPC symptoms are few- enlarged fatty liver, enlarged spleen and some neurological high frequency hearing issues that don’t affect his daily life. We hope that we are able to keep him this healthy but unless something new is found he will deteriorate. Please help us save Johnathan and all the other children suffering out there with NPC!
The first step in finding a cure for this devastating disease is education and awareness. Please visit johnathanspencer.org to find out more about Johnathan, and how you can help. Thank you for your support.
“He only has a childhood to live a lifetime!!!!”