HONOLULU (KHON2) — We first met this Laulima family a decade ago after they had just received their baby’s diagnosis and a life expectancy of two years.
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“And then she turned how old, 10 years old in September. So that was exciting so we had a little birthday party to celebrate that,” Wendy Irie, Nawai’s mother told KHON2.
Nawai is now in the 4th grade and speaks through a computer by pressing different icons.
When asked how she’s feeling, Nawai responded “happy, happy.”
A movement of her fingers to press a button may not seem like a big deal but it is. Nawai lost control of her muscles as a baby, when she was diagnosed with a rare genetic disease called Spinal Muscular Atrophy at three months old.
Nawai, initially given 2 years to live, just turned 9
But Nawai has outlived her life expectancy and has gotten movement back thanks to a relatively new medication, lots of love and support and the machines that she depends on 24-7.