The story of robin
On July 23. 1995 our daughter Karah was born . The doctors told us that she had a genetic disorder, DNA testing was conducted. Three days later we were told that Karah had Trisomy 18. We soon became experts in the genetic disorder. We were told that Karah had days to live. So we quickly learned what we had to take our daughter home. Well we quickly discovered that Karah was writing her own book. days turned to weeks, weeks turned to years. We were blessed to have Karah for 18 years we saw her become a toddler, grow into a young child, become a teenager, and grow into a beautiful young lady. In my wildest imagination on that we received her diagnosis did I ever think that Karah would celebrate so many milestones. Karah was not the “textbook face of Trisomy 18. She did not let the genetic condition determine her life. On November 20th Karah passed away. She has left a lifetime of memories for her family. She has helped medical professionals see beyond the condition and realize that children with Trisomy can and do have quality life. Today we celebrate the differences that make us unique and the differences that unite us. Happy National Rare Disease day. Written in loving memory of Karah.
Love,
Mom, Dad, Olivia, and Spencer.