Double Blind

The mother of disabled twins doggedly pursued the root of her children's illness and found it in their genome profiles.

Written byCristina Luiggi
| 3 min read

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The Beery family, standing before the sequencer that decoded the genomes of twins Noah and Alexis. RETTA BEERY

At two years of age, fraternal twins Alexis and Noah Beery had not met most of their developmental milestones and had such poor muscle tone they could barely walk or sit on their own. Noah drooled and vomited continually, and Alexis suffered from body tremors during which her eyes would roll back in her head for hours at a time.

An MRI scan had revealed damage in the periventricular area of Noah’s brain, which led to a diagnosis of cerebral palsy. But children with cerebral palsy tend to improve with treatment; in contrast, the twins’ conditions, particularly Alexis’s, worsened over time. When she was 5 years old, Alexis developed respiratory problems and continued to have protracted seizures. She also had extreme difficulty walking and was ...

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