Osteogenesis imperfecta presents in many ways, and people living with OI come in all shapes and sizes! Meet some members of the OI Community and read their stories here!
Meet Robin Wright of
It may have been the early memories of rummaging through her mother’s jewelry box that sparked Robin Wright’s lifelong interest in jewelry. Many happy hours were spent twirling strands of necklaces and trying on her mother’s rings and bracelets. Though little could she realize then that her early fascination would one day lead to the position as Vice President of Jewelry Sales at Sotheby’s, one of the world’s most prestigious auction houses.
Meet Kyle Mulroy of
Meet Ethan Desai of
Meet Ethan Desai of
Meet Nicholas George of
Superheroes are seven-year-old Nicholas George’s thing right now. He has amassed an impressive collection of nearly 400 Marvel figurines, and can readily name each one.
“I didn’t even know there were that many,” laughs his mother. “He has a bucketful of them and is always on the search for a new one to add to his collection.”
To his parents, Dottie and Tom, and many in the St. Louis area, Nick is a superhero as well.
Since turning three, he has become an outspoken advocate for not only OI but for all kids with disabilities. His contagious personality has landed him both TV and radio interviews, master of ceremonies opportunities at a local children’s charity, as well as an open door invitation to ‘teach’ a class on OI to second-year medical school students.
Meet Brennan Tapani of
The mother of two-year-old Brennan Tapani has an unwavering message for parents of children with one of the most severe forms of osteogenesis imperfecta.
“I wish I would have known when I was pregnant how special and amazing and how much we love him now. We honestly feel lucky and blesed to be Brennan’s parents and have him in our life. I honestly think we’re luckier than people who have all typical kids because Brennan brings such a depth of love that you just can’t imagine without having a child with a disability. You just don’t even know.”
There was no family history of OI prior to Brennan’s birth.
The Tapanis have two older children: four year-old Rudy and three-year
old Hans, and now a two-month old daughter, Della.
Meet Susie Wilson of