Tag Archive | getting the right fit

Tailored For Function

My Dad held my one-year-old daughter Tammie on his lap with the familiar ease of a man who had raised seven children. She squirmed, so he slid her down between his knees, giving her a chance to practice standing while being fully supported. Sitting down on the couch across from him, I realized that no one had ever held Tammie that way before.

Tammie has TAR syndrome. (thrombocytopenia with Absent Radius) This is a rare birth defect. TAR causes low blood platelet levels which can cause bruising and bleeding. Radius bones in the arms are always missing, but the hands are fully formed. My daughter’s arms are elbow length. One syndrome challenge that we needed help with were her knees. They didn’t seem to have joints.  

My husband sat down beside me and said, “Our doctor told us that if Tammie is ever to walk, she needs surgery on both of her knees.”

Nodding, I added, “He also said there isn’t a local doctor who can do the type of surgery needed. We’re taking Tammie to see a doctor at the Mayo Clinic next week.”

The three-hour drive to Rochester, Minnesota to the famous Mayo Clinic required us to leave home before daybreak on an overcast, early spring morning. Once there, Arnie and I were asked if we would allow interns to be present for Tammie’s exam because, “We don’t see many children with TAR syndrome.” During his exam the doctor demonstrated to several students how neither of her knees were functional.

That year Tammie had surgery on both knees and was fitted with cumbersome, full-length leg braces that were cable-connected to a belt buckled around her waist. She took her first steps when she was two and a half years old. Arnie and I weren’t sure if she started walking because of the braces or in spite of the braces.

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