Hoping a genome test will ID daughter’s mystery disease

It isn’t easy being 16, social, smart — and sitting in a wheelchair.
Lilly Grossman has never been completely “normal” (quotation marks her emphasis).

Afflicted with a mysterious form of muscle weakness since infancy, she has trouble walking, talking and eating. It’s hard for her to hold her head up. At any moment, she might fall forward until one of her parents lifts her back into position, wedging her into place with an ever-present pillow or two.

Because her speech can be difficult to understand, she depends on text messages and social media to gab with her friends. Sleep eludes her. Seizure-like fits rouse her at night, bringing her parents running to her bedside.

Perhaps worst of all, she spent most of her childhood not really knowing what was wrong with her.

Read the full, original story: Family hopes genome test will help cure girl’s mystery disease

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