David Aaron

December 2, 1997 - March 19, 1999

 David passed away from complications of Krabbe Disease.

"If God sends us on a stony path, He provides strong shoes." Corrie Ten Boom

 

 

 

Mommy, Brian and Cecilia

What is Krabbe Disease?

Globoid Cell Leukodystrophy, more commonly known as Krabbe (crab a) Disease, is an inherited neurodegenerative lysosomal enzyme disorder affecting the central and peripheral nervous systems. Children who inherit the disorder lack an important enzyme (GALC) that is needed for the production of normal myelin (white matter) in the central and peripheral nervous systems. Myelin is the protective covering of the nerve cells and acts like insulation surrounding an electric wire. When the enzyme GALC is deficient it produces toxic substances in the brain, causing myelin loss, change to brain cells, and neurological damage. Progression of the disorder is rapid and death occurs in early childhood.

The Cause Behind Krabbe Disease

Krabbe disease is inherited in an autosomal recessive manner. If both parents carry a disease-causing mutation in the GALC gene there is a 25 percent chance of having a Krabbe affected child with each conception, a 25 percent chance that each offspring will be a carrier and a 50 percent chance of having a child who does not carry a disease causing mutation. This genetic disease is found in all ethnic groups. The carrier rate in the general population is estimated to be 1 in 125. Krabbe Disease occurs in about 1 in 100,000 births in the United States. Diagnosis can easily be made by testing the white cells from a blood sample for GALC activity.

When David was diagnosed with Krabbe disease, I tried to understand the purpose of why a child would be born and not have a chance at a full life.  I then heard about Bone Marrow and Cord Blood Transplants that Duke Hospital had recently started doing as a treatment, I then had the appropriate tests done, just to find out David was not a candidate.

It was not long before I knew that God had His reasons for David and his illness.  God started using me for other families as they came to Duke Hospital for that same treatment that my son was unable to receive.  David himself touched so many people in so many different ways, he was truly a SPECIAL child sent from Heaven and I am so blessed that God intrusted David to me. 

I volunteered to help families for the next 4 years and He is still using me 7 years after David passed away.  I was hired as the Director of Family Support and Services in October 2002 for The Hunter's Hope Foundation (www.huntershope.org), a non-profit Organization started by Jim Kelly (former Buffalo Bills Quarterback and Hall of Famer) and his wife Jill, in honor of their son Hunter.  Hunter lost his battle with Krabbe on August 5, 2005.

Please return to David's site whenever you can to check out new pictures I place on his page and read about the new things happening in loving memory of David.

David will forever be in our hearts and memories.