Laulima: Baby Nawai, an SMA fighter

Laulima

HONOLULU (KHON2) — An update on a little girl KHON first met a few years ago as “Baby Nawai.

Kathy Muneno checked-in on Nawai and her mother at their home on Hawaii Island.

Nawai is also a smart girl, strong-willed, her mother says who loves the outdoors, and all things princess. She was one, a fairy princess, for Halloween this year.

And she has a new love.

“Oh boy, her favorite thing to do now is to go shopping,” said Wendy Irie, Nawai’s mother. “Oh my goodness. So she likes going to like Longs or just any little store that she can.”

Nawai lost her first tooth in 2019 and she celebrated her birthday in September, outliving her life expectancy by three years now.

“She’s actually doing really well. She just turned five this year,” said Irie.

Spinal Muscular Atrophy robbed away Nawai’s ability to move or even breathe on her own just a few months after she was born. There is no cure. But as Nawai’s 9-year-old cousin Tira says in a school poster she made, Nawai is a fighter, an SMA fighter, who inspires all of us to “look within.”

Nawai has been taking a relatively new medication, for two years now, and it seems to be helping.

“Like her shoulders move more, her legs, and arms, we can actually put them up in this gym and she can actually color books and stuff by herself,” said Irie. “And she does, they’re called adaptive switches. She can press them with her fingers and turn on the Christmas tree lights by herself. You know, just things like that.”

To get Nawai outdoors more, the family is working toward adding a wheelchair accessible sidewalk through their yard.

“It’s not something that she needs, but I’m sure it’ll improve her quality of life.”

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