Who Was Emma?

Our daughter, Emma Catherine, was born with a rare genetic syndrome on July 6, 2001. At the time of her birth we didn't know what Cockayne syndrome was and it took three years for Emma to finally be diagnosed. Cockayne syndrome is extremely rare, and many children who have CS die in childhood, undiagnosed. Emma lived to be three years old and passed away under hospice care just before her fourth birthday, on May 22, 2005. 

The meaning of her name described her sweet spirit to perfection - Emma Catherine - "one who heals, embraces everything, and pure."

We cherish every moment we had with her and know we will see her again. Our faith in God has carried us through this journey and it was an honor to be her parents. 

There is a peace in my soul which defies earthly understanding. 

It is because of Emma we began to reach out to families in our community through the non-profit organization formed in her honor, Circle of Hope. Our goal has always been to encircle families walking a similar journey as we once were with support, advocacy and compassion.

(Please note the Circle of Hope website links in the following articles are no longer correct for our organization)

http://blog.al.com/entertainment-times/2010/10/post_37.html

http://blog.al.com/natural-living/2009/05/walknroll_for_sma.html

http://blog.al.com/enjoy/2008/12/sorrow_in_the_season_of_joy.html

http://www.army.mil/mobile/article/?p=15265

Emma - always laughing

Posts about Emma:

Truth

Emma's Homecoming

Little Bit

Our Life, Seven Years Ago

Six Years Ago

http://www.thechristianwoman.com/christian-women-topics/homecoming

For more information on Cockayne Syndrome  or if you suspect a child in your life may have cockayne syndrome please go to www.cockaynesyndrome.net. There is a tremendously supportive network of parent's out there to help. We cherish the friendships made because of this rare syndrome.