Sienna’s Story

Sienna Rose was diagnosed with Smith-Magenis Syndrome in June of 2006 when she was just 4 weeks old after undergoing open heart surgery for a ventricular septal defect and an atrial septal defect. Since then, she has endured 9 other surgeries, including a tethered spinal cord repair, two corrective eye surgeries, countless sets of ear tubes, adenoid removal and a torticollis repair.

In addition, Sienna has been in intensive speech, physical and occupational therapy since she was three months old. She was significantly delayed in walking, talking, and other areas of development. Sienna attends first grade in an inclusive classroom with the support of a 1/1 paraprofessional. She loves school and it seems as though everyone in the community knows Sienna. We call her the Mayor because she is always introducing us to new people! Sienna and her family are surrounded by a tremendous amount of love and support and we feel fortunate to have access to the resources we have in place for her continued development.

She is a sweet, loving, funny and bright little girl. However, we still have a long journey ahead. Some of the typical behaviors seen in SMS have manifested themselves. She has frequent tantrums that often include some form of self-injury. It often feels as though we need to walk on egg shells around her because a meltdown can and does occur at any moment, often for seemingly benign reasons. These unpredictable, erratic behaviors can make daily activities very difficult, sometimes even impossible.  There is no guidebook or map for how to address the complex issues associated with the syndrome. For this reason, we began the SMSRF. It is our deepest desire to solve the SMS puzzle by supporting research that is focused on finding the answers that will enable our special children to reach their greatest potential.