Everly was born October 22, 2019. She was 7 pounds and 15 ounces and just beautiful. She was a happy baby and was rarely sick. The closer she got to one, we noticed she was not walking or trying to so she got some testing and x-rays done with her pediatrician. Some abnormal results came up on her chromosome test so we got referred to her genetic doctor at Le Bonheur, Dr. Henry Joel Mroczkowski. We did testing with him and found out Everly has MPS 1/ Hurler’s Syndrome. We had never heard of it before and were just devastated. Everly started enzyme replacement therapy July 2021 and started physical, occupational, and speech therapy August of 2021. We fought with insurance back and forth for over a year and we finally got the green light to go to Minneapolis, Minnesota to University of Minnesota Masonic Children’s Hospital for bone marrow transplant in February 2023. We went and met Everly’s transplant team the end of February 2023 and did work up week. Then on May 20, 2023, we went back to Minnesota. On June 6 Everly was admitted to the hospital to start the process for transplant. June 16, 2023 was Everly’s transplant day and we were in Minnesota until the end of September. Everly has done wonderful since transplant and we are so blessed. To God be the Glory.