Celebrating Lilie

This sweet angel is Lilie. She was born with a congenital heart defect called Dilated Cardiomyopathy. Later she was also diagnosed with GM1 Gangliosidosis. It is a rare, incurable lysosomal storage disease (enzyme deficiency). Because toxins can not be broken down, she will continue to degenerate. Lilie is now 18 months old, most with this disease don't live to celebrate their second birthday. The Clark family continues to celebrate each day they have with Lilie.

To learn more about Lilie's story, please visit...
www.caringbridge.org/visit/lilieclark

The Clarks contacted me due to the incredible non-profit organization Now I lay Me Down To Sleep(NILMDTS). Originally NILMDTS offered bereavement photography to families suffering the loss of a newborn. However now due to the many volunteer photographers NILMDTS offers photography for older babies and children. For more info on NILMDTS, please visit...
http://nowilaymedowntosleep.org/

I am so honored to be chosen to document a part of Lilie's Journey.