Advocating for Sara: A Parent’s Perspective

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SS_flowerSara is a survivor.

Sara, 9, is described by her parents, Rei and Daniel, as a girly girl and lover of all things Hello Kitty. Sara was born with Trisomy 16, a chromosomal abnormality. Last year, she received a tracheostomy and was placed on a ventilator.

Sara’s parents are fighters.

For the last nine years, Rei and Daniel have been operating with one goal in mind: To keep Sara home and out of the hospital.

Together, Sara and her family are supported by their friends, physicians, specialists, therapists, and nurses, who are all fighting to keep Sara healthy – and at home.

Sara’s Story

Sara has overcome huge hurdles in her nine years. In no time, Sara goes from not feeling well to living in the ICU. A few years ago, Rei and Daniel were told there was nothing else to do for their little girl.

Rei_SS“This was the single most devastating news we’ve ever been told. We were going to lose our daughter,” recalls Rei. A few days later, Sara surprised everyone when she turned a corner and was safely discharged home.

“She is our little miracle,” Rei says, recalling the day Sara fought her way back.

Sara’s Nurses

Unlike the hospital, at home there is no physician, respiratory therapist, or emergency team. A nurse’s role is more comprehensive, and requires a greater need for communication, asking questions and thinking critically.

“This is a kid that if you’re not on top of everything, she’ll take you for a ride,” Rei explains as she discusses the importance of her daughter’s care.

Laura Cannata, RN, is one of those nurses. For more than three years, she has been someone Rei and Daniel can rely on for Sara’s care.

“Laura knows Sara’s care as well as me and Dan,” Rei says. She continues, “Sometimes she even picks up on things before we do.”


 Sara’s Future

“It’s our job to advocate for Sara because she can’t do it for herself,” explains Rei.

Rei and Dan continue to fight for Sara’s future. If there’s one thing they’ve taught us, it’s to never give up on your loved ones.

Rei and Dan are the owners of Sara’s Gear, a company inspired by their daughter that manufactures fleece buntings that fit into strollers and pediatric wheelchairs. To learn more, click here.

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