STXBP1 Encephalopathy

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STXBP1 encephalopathy.

Our daughter Lucy was born in May 2018, and shortly after was diagnosed with a rather severe neurological disease called STXBP1 encephalopathy. This is a rare, genetic, neuro-developmental disease that results in severe intellectual disability and an unpredictable combination of seizures, motor and behavioral impairments. Needless to say, it’s a life-changer for the kids and families affected – check out the family foundation to learn moreĀ
There are no cures, but we’re working to change that.