Purnell
04/23/2016 - 12/28/2019

Purnell was the most gentle soul. He loved music, Donald Duck, silly sounds, reading stories, and being surrounded by his loved ones. His life was short but his legacy is a mighty one. At 13 months, Purnell was diagnosed with Niemann-Pick type A, a rare and fatal genetic disease with no cure. In his short life, Purnell inspired tens of thousands of people to take action to fight rare diseases. He raised over $750,000 for research advancements, helped facilitate treatment options at lightning speed, and blazed trails as the first patient to ever receive treatments for his rare disease. A true warrior, he lived beyond expectations before rejoining heaven. He brought out the best in people from all corners of the world, teaching us to appreciate the smallest things, face uncertainty with courage, and never give up. His life was short but full of love, meaning, and accomplishment, and his impact will be lasting.
~Taylor, Purnell’s Mom

Niemann-Pick Disease

Niemann-Pick disease is a condition that affects many body systems. It has a wide range of symptoms that vary in severity. Niemann-Pick disease is divided into four main types: type A, type B, type C1, and type C2. These types are classified on the basis of genetic cause and the signs and symptoms of the condition. Infants with Niemann-Pick disease type A usually develop an enlarged liver and spleen by age 3 months and fail to gain weight and grow at the expected rate. The affected children develop normally until around age 1 year when they experience a progressive loss of mental abilities and movement. Children with Niemann-Pick disease type A also develop widespread lung damage that can cause recurrent lung infections and eventually lead to respiratory failure.

Artist: Lucas Kolasa