provided to The Santiva Chronicle
Some stories don’t begin with strength—they reveal it through courage and a smile. When Susie Wilson wheeled her wheelchair to the front of the room, the Sanibel-Captiva Rotary wasn’t just hearing from another speaker; they were meeting a survivor who didn’t let limitations define her.
Born with Osteogenesis Imperfecta (OI), a rare genetic disability often misunderstood as a life defined by impossibilities, Wilson brought a voice shaped by resilience, insight, adaptability, and lived experience. Through honesty, clarity, and a sense of humor, Wilson shared about OI not as a barrier to possibilities, but as a lens through which courage, adaptability, and determination come sharply into focus.
Osteogenesis imperfecta (OI) literally means “imperfectly formed bones” and is a rare, complex genetic disorder often characterized by bones that break easily, aka Brittle Bones Disease. The vast majority of OI is caused by mutations in genes that affect the structure of type I collagen or genes whose proteins interact directly with it.
These mutations not only affect how bones are made, shaped, and strengthened, but also the structure of other tissues. Therefore, while bones that break easily are a major feature of OI, many other body systems are also affected. Individuals with OI may also experience dental issues, hearing loss, muscle weakness, joint hypermobility, cardiac, respiratory, gastrointestinal, and other health-related issues.
Wilson has been involved with the OI Foundation since 1992, served on the OI Board of Directors for six years, and co-chaired the Tampa OI Support Group for over 20 years. Wilson chaired the multiple fundraisers, has spoken at the National and Regional OI Conferences, and now co-chairs the Regional Support Group.
Wilson worked in medical billing and insurance for over 25 years before retiring in 2019. She also volunteers at J.N. “Ding” Darling National Wildlife Refuge on Sanibel Island, has been a member of St. Michael All Angels Church for fourteen years, and currently serves on the Vestry and works at Players Circle Theater in Fort Myers.
To learn more about the Sanibel Captiva Rotary Club, join us for breakfast every Friday morning at 7:30 a.m. at the Sanibel Community House, or visit the website, www.sanibelrotary.org.
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