During coronavirus, families like mine have been hung out to dry


Every night is the same. At 3 a.m., I wake in panic, my heart pounding. Is she awake? What’s that sound? Is she smashing her head against the wall again?

I haven’t slept for eight hours straight in 12 years, and it’s not because I have three young kids (Oliver, 12, Charlie 10, and Marlowe, 7). Marlowe has a rare neurogenetic disorder called Angelman Syndrome. She has a biological sleep disorder, experiences seizures almost every day and is globally delayed. She can’t speak (which is extremely frustrating because, like most seven year olds, she has a lot to say), so she bangs her head because it gets an immediate response. In a twisted way, it’s quite smart.

I stumble down the hall to her room. When she sees me, she stops. In the half dark, a smile spreads across her face. A beatific, heart-crushing smile. One of the few upsides of Angeleman’s is that,…

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