Lucy, Mom and Dad
Our daughter Lucy (aka Lulu, Lucy Lu, sweet potato, unicorn) 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 more http://stxdisorders.org
There are no cures, but we're working to change that.