“Alone and untrained, a mother becomes nurse for her daughter with disabilities” – The Boston Globe

“Noelia Ferreira wants her Abi, born with a rare genetic defect, to know comfort and joy and never an institution.”

Abi“At 6:30 in the morning, Noelia woke her daughter, changed her diaper, and gave her a sponge bath.” – Suzanne Kreiter/Globe Staff

The yelp from the baby monitor startled Noelia Ferreira from a shallow sleep. It took five seconds, maybe, to bolt across the hallway to her daughter’s room, her movements in the dead of night fluid, automatic.

“Abi was lying on her side, her limbs outstretched and rigid in the clutch of another seizure. Noelia leaned in close so their faces were inches apart, her long hair falling around them like a curtain. She gripped Abi’s hands in hers.

“‘It’s OK,’ she promised, making her voice strong. ‘You’re OK now.’

“In sleep, Abi resembled any 15-year-old, with her unruly curls, smooth skin, and slender limbs. But a rare prenatal glitch — a missing piece of genetic code — had interfered with her development. Abi’s body didn’t work the way it should. She could not speak or walk. She was partly blind and deaf, and it was hard to know how much she understood. Her mother fed her through a tube.”

Click here to continue reading this Boston Globe article.

 

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