Peytan Taylor, appears to be a normal 6-year-old little girl, however, in December 2010 at just over one year old she was diagnosed with a rare disease called Cystinosis. You would never know the struggles and battles she goes through on a daily basis. She was happy and looked to be a healthy little girl doing all of the things she was supposed to at her age. Then she started losing weight, having excessive thirst, and not walking. She looked frail and sick. We decided to take her to the doctor and see if we could get our healthy looking little girl back. They ran test after test, lab draw after lab draw. Then the dreaded but much needed results came…. the disease called Cystinosis.
This has only been found in 2,000 people throughout the world. We were told she wouldn’t live past the age of 20 without treatment. This diagnosis hit us hard; however, there was no time to waste in getting her treatment started. No matter how terrified, useless, and heartbroken we were, our child would never have a normal childhood. We moved forward by pushing those negative feelings and fears aside and getting to the work at hand.
We want to thank all of you for your love and support through the hardships and the milestones in her life. We wouldn’t be nearly as strong as we are without each and every one of you. We, her parents, brother, grandparents and especially, Peytan are deeply appreciative for your love, support and especially your prayers. May God bless each of you in your journey through life’s treasures and pleasures.
Thoughts of love and friendship,
Channing and Jamie Taylor