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.
“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.
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.
The electric bills to run the machines cost $400 a month but thanks to a donation by Walter’s Electric of solar panels, batteries and installation, it’s now $0 to $35 per month.
Nawai would like toys for Christmas, as all kids do.
But her family would like help finding a Registered Nurse. They have two rotating but need a third.
“They call them home health nurses and we have an agency that we work with that provides the nurses but I guess there is a nursing shortage so hopefully we can find one–someone that’s caring and wants to work with children.”
If you are a registered nurse on the Big Island, with ventilator experience or ICU or pediatric ICU experience and can work full-time or part-time, go to hihealthcarehawaii.com/careers and fill out the application for RN Home Care on the island of Hawaii.