Welcome to our CaringBridge website meant to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting!
Son of Crystal Morris, Gavin is 14 years old and in 8th grade. He likes playing video games, kayaking, spending time with his family and friends and cooking. Gavin has dreams of becoming a chef when he grows up.
Gavin was diagnosed with Cystinosis shortly before his first birthday and has since been undergoing treatment locally at the Nationwide Children's Hospital and at the NIH in Bethesda MD. Since his diagnosis with this rare disease he has had to take medications around the clock that have terrible side effects. He's undergone uncomfortable and painful procedures and surgeries and been limited in his involvement in sports and other activities other kids his age enjoy.
Gavin's kidneys are now functioning at only 13% and is being placed on the wait list to receive a gift of life. To see if you could be a match, please contact Angela, his Living Donor Coordinator at 800-293-8965, press option 3, then press option 2. She will mail you a package of information, DVD and forms to return. Once she receives the forms they will contact you to begin initial testing to see if you are a match for Gavin.
What is Cystinosis?
It's a rare disease that is typically diagnosed prior to age 2. Cystinosis is a genetic metabolic disease that causes an amino acid, cystine, to accumulate in various organs of the body. Cystine crystals accumulate in the kidneys, eyes, liver, muscles, pancreas, brain, and white blood cells. Here's a video to help you better understand
https://www.youtube.com/watch?v=ZgQLbNRh580 and more information can be found at
https://cystinosis.org/what-is-cystinosis/symptoms-treatment.Thank you so much for visiting and please check back for updates.
