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Meet Kinsey
and Kinsey Family
Location: Alpena, Michigan
FAMILY MESSAGE:
Our daughter, Kinsey is undiagnosed. She is 9 years old. We started this journey with specialists and testing last July. She has had MRI's, ultrasounds, EEG, EMG, tons of bloodwork. She had a small scale neuromuscular genetic test done. So far the results have primarily been normal. Her MRI showed subtle changes in the white matter and fourth ventricle of her brain. She has trouble walking and uses a gait trainer and/or forearm crutches to get around. She wears AFO leg braces to keep her toes from dropping. She has significant weakness in her upper legs and upper arms. Her balance is horrible, she falls a lot. Her first symptom at around age 6 was just awkwardness and clumsy walking. It has progressed and continues to deteriorate. We have seen a Pediatric Geneticist who recommends Whole Exome testing, but her insurance refuses to cover it. We are currently searching for other options.
Kinsey Signs and Symptoms