Hendrix

Hendrix's Story

Hendrix was born slightly premature at 36 weeks. Shortly after birth he went into respiratory distress and required a 60 day NICU stay. During this time we accidently stumbled upon his Hunter Syndrome diagnosis. We learned he is missing a piece of his X chromosome, that is indicative of Hunter Syndrome. To say our world was turned upside is an understatement. I went from having dreams of watching my first child grow up, to unimaginable grief. He started enzyme replacement therapy at 3 months old and joined a clinical trial that gave this same enzyme to the brain at 18 months old, and he still receives the weekly and monthly treatments to this day. Although we grieve for what could have been, we are grateful for the early diagnosis, and realize this is a huge blessing. Hendrix's life has been devoted to saving it. We have been so busy trying to save his future, that we were missing the present. This journey has taught us it is possible to feel grief and joy simultaneously. The joy and happiness he brings to our life carries us through our grief. He is the bravest person I know. He loves history, especially presidents. He loves football, especially the Bengals and you can hear him yell WHO DEY all through the house. He loves playing playstation and watching WWE wrestling. He wants to help all homeless people. He truly lives his life with such kindness and bravery. Everyone should be like our Hendrix The Brave.