Sienna's Steps

Our 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, four 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 first walked at the age of two and began speaking around age 3. Sienna receives ABA therapy several days a week and attends a full-time Early Intervention program at our community school. 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. 

Sienna will turn six years old 2 days after race day and this past year has been a challenging one. 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. Because there remains many unanswered questions about SMS and funding for research is minimal, we started the SMS Research Foundation www.smsresearchfoundation.org in June 2010. 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.

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