Cure For Emmery
About Us
Emmery was diagnosed on February 8, 2022 with KIF1A Associated Neurological Disorder. We will be posting updates about her progress, fundraising events, and research advances here. Thank you for your support!
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KIF1A Associated Neurological Disorder is a rare disease that is progressive and causes many varying symptoms including balance and coordination issues, seizures, muscle spasticity, vision impairment, developmental delays, feeding difficulties, peripheral neuropathy, and more.
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Emmery was diagnosed shortly after she turned 2. We started to notice some delays when she turned 1. We took her to a developmental specialist and a geneticist who both said that they didn’t think there was anything wrong with her. They just thought that she was a little bit behind. It was the third specialist that I took her to, a pediatric neurologist, who said that he did think there was something wrong, more specifically a mutation in one of her genes. He made the diagnosis 5 months later after a long battle with our insurance company.
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We appreciate everyone’s love, prayers, and support! We are so grateful for our community. Thank you to everyone that has been here for Emmery! We are forever thankful!
