Amanda's Headstone

Amanda began life like any young girl. At the age of 6 she was diagnosed with a debilitating genetic disorder so rare that we were told only 50 people in the world shared her condition. The diagnosis, Cockayne Syndrome, would change her family’s life completely. This disease would cause dwarfism, degeneration of her body, and early death. Her life expectancy was about 15 years. Amazingly and with much tenacity, Amanda made it to her 30th birthday. Amanda touched many people lives throughout her life. In what her family has termed the Amanda Factor, people who came in contact with her were changed and affected, often deeply. Amanda was spunky and sharp as well as caring and often compassionate. She was a person who forced others to take the time to actually talk and reflect. Knowing her was taking the time to smell the roses. During her life Amanda faced many challenges. Due to the nature of her disease, Amanda had to be home schooled, eventually went both deaf and blind, and lost most of her mobility. Amanda only grew to 39 inches and had a frail body only weighing 27 pounds. Her mother and stepfather, her brother, her aunt and grandmother and many friends who volunteered their time and talents cared for Amanda. Sadly, May 10th of this year was Amanda’s last day with us. Though we have made it through the funeral we are hoping to erect a granite gravestone marker in her favorite shape and color. Etched on it would be her favorite cat, who was her companion for many years. This marker is in honor of Amanda and all she meant to the many people who were blessed to know this little girl.

Donations

  • Fund Raiser 
    • $8,300 (Offline)
    • 64 mos
  • Marty Heilman 
    • $100 
    • 65 mos
  • Roger & Pam Field 
    • $50 
    • 67 mos
  • Robert Schiffner 
    • $1,500 
    • 67 mos
  • Stuart Hall 
    • $100 
    • 68 mos
See all

Organizer

Kyle Davis 
Organizer
Moses Lake, WA
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