Many of you are aware that my sister's granddaughter, Celia Betz, had Batten, a rare neurological disease that currently has no cure. Celia passed away Sunday, January 15, 2012.
March 7, 2007 - January 15, 2012
Celia holds baby spoon that belonged to her namesake, her Great Great Grandmother, Celia Cathcart Holton
August 2008 - about 5 months before the diagnosis
December 2011
From Celia's obituary - "Celia Eleanor Betz, age 4, died peacefully on January 15, 2012. Celia was born on March 7, 2007 and she was almost two before her family learned the she had Batten Disease. Since that time, Celia, who was loved deeply by family and friends, has touched many lives and taught many lessons." Click here for rest of obituary.
Celia inspires many and helps us see the big picture. People with big and generous hearts stepped forward to be of service. Here are a few that come to mind.
Amy Parrish is a Columbus photographer who donates her time and beautiful photography to families with "desperately ill" babies and children. She took amazing photos of Celia. See one of them here.
The Cardthartic people picked up Parrish's photo and created a card. They were impressed with Celia's beauty and the lushness of the setting (Jan & Tim's yard). When Carthartic learned Celia's story they helped with a Batten fundraiser in German Village, Columbus. The company contacted Andy and Jenni and said they'd like to do a booklet for Celia's memorial service. It is beautiful.
Joe Blundo, Columbus Dispatch columnist, wrote about Celia several years ago. Today, he wrote a blog posting on Celia and the "cruelty" of this terrible disease.
Nationwide Children's Hospital Hospice - wonderful people providing care and support in the most difficult of times.
The Batten Disease Support and Research Association - supporting families with loved ones who have this "rare neurological disease that currently has no cure."
Family and countless friends - many were brought together through serving Celia and her family. So many blessings for everyone involved.
Celia's parents have graciously shared their journey through their blog. Their posts often touch my heart and help me think about the meaning of our life here on earth, the promise of life after death, the importance of making the most of our earthly journey, the importance of family and friends, and finding joy and meaning even in the midst of great sorrow and disappointment.
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