DAILY LIVING & MOBILITY

Our Life Shared: Kaylee's Story

Rare Disease & Syndrome

Kristina & Kaylee

Kaylee's Life Undiagnosed

Hi, my name is Kristina and this is my daughter Kaylee. She is 7 years old and has a rare unknown bone condition that results in easily broken bones from little to sometimes even no injury and causes her daily pain. Kaylee uses a wheelchair daily, has AFO leg braces, a TSLO back brace and uses a walker on occasion as needed - she is able to walk short distances unassisted as her pain permits though she primarily crawls at home. We have seen several different types of specialists and Kaylee has gone through numerous forms of tests including two different types of genetic testing yielding no additional answers. We’ve been told it’s possible she may be the first with her specific type of bone disorder and until another person is documented like her, her underlying condition may remain undiagnosed. Not having any type of path to follow can be really difficult. Despite her struggles and the many unknowns though, she is an amazingly strong little girl that radiates pure joy. Not a day goes by that our house isn’t filled with laughter. In an effort to raise awareness and in hoping for a diagnosis, we openly share our family journey and adventures on social media. We try our best to mostly focus on the positive and embrace life while providing Kaylee with the best childhood possible.

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