Life Having Holt-Oram

Welcome to our channel!!  

Our family carries a gene mutation that causes Holt-Oram Syndrome (HOS).  We have created this channel in hopes of bringing awareness to this disease and to share our everyday lives with you!  

Shauna (Mom), Pandora, and Jude, were all born with HOS.  However, due to the nature of the mutation Pandora and Jude have more severe representations. We hope that our everyday experiences can help other's like us as well as help bring awareness to others.

Feel free to send us letters and love to:  PO BOX 93092
                                                                       Rochester, NY 14692-7392