Laulima: Young girl outlives life expectancy, living with spinal muscular atrophy

Laulima

HONOLULU (KHON2) — There’s a little girl on Hawaii Island that has lived four years past her life expectancy. This year she turned six years old. She has been part of our Laulima family since she was a baby and many of you have helped her and her family over the years.

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The smallest movement can bring the biggest joy. Those movements are made possible thanks to a medication 6-year-old Nawai started taking at 3 years old for spinal muscular atrophy, which, when diagnosed as a baby, left her unable to move and with a life expectancy of two.

Nawai doesn’t have the muscles to enunciate or say words, yet she can communicate and in many ways she’s like any other child. “If she’s happy then you’ll see her eyes light up or if she’s mad, she kind of scowls or rolls her eyes if she doesn’t like something,” said Wendy Irie, Nawai’s mom.

“Pink and purple still. Anything glittery and shiny, and toys princesses and Frozen and all those little dollies,” Wendy said of what Nawai likes.

Nawai achieved milestones this year with graduating Pre-school with a drive-by celebration and attending Kindergarten. And yet the fragility of life for Nawai is never unnoticed, the fear never far. Her medicine is three times a year and this last time, last month, it caused a spinal leakage and severe side effects.

“So the last 3 or 4 weeks were really rough. Because for every little thing you don’t know how bad it’s gonna get or what will happen. Are we gonna have to go to Kapiolani again, you know just all those kinds of stuff so it’s so scary,” said Wendy.

But as long as the benefits of the medication outweigh the negatives, and either insurance or the company lets them stay on the free drug program, because it costs $125,000 per injection, they’ll continue. And, Nawai’s feeling better now, so they can all enjoy the holidays.

“Guess this year you really put things into perspective. So just thankful that we’re all still here and healthy and that my husband has a job, you know,” said Wendy.

In the spirit of Laulima, our many hands working together, we can help this family to find some joy in this holiday season. Their Laulima ‘ohana code is B693.

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