Alexandra Carmichael

September 6, 2010

Karen Herzog and Richard Sachs of Sophia’s Garden and Valley Design Group were the last to speak. They stood before a hushed audience at the last Bay Area QS Show&Tell, telling the incredible, moving story of their late daughter Sophia.

Sophia had Niemann-Pick Disease Type A, a rare lysosomal storage disease. Karen and Richard coordinated her care themselves, keeping detailed collaborative records of Sophia and even running their own n=1 clinical trial. The smooth functioning of Sophia’s extensive, international community of care and her very life depended on accurate documentation – one small thing that went wrong could mean that she would die.

Watch Sophia’s inspiring story below.

Karen Herzog and Richard Sachs – Sophia from Gary Wolf on Vimeo.