HONOLULU (KHON2) — Baby Nawai was diagnosed at six months with a deadly disease that robbed her of movement and speech.
This gave her a life expectancy of two years old, but she’s now eight years old, with a way to talk.
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Nawai Irie (computer), “no.”
Wendy Irie, Nawai’s mother said, “Was that a no? Yeah (laughing).”
Not an uncommon word for any 8-year-old. And like most her age, Nawai Irie wanted to speak for herself when I asked what she’d like for Christmas.
Nawai said, “(computer beeping) “toys.”
Toys of course. She wouldn’t say what kind.
Wendy said, “not sure? (pause) “She says she’s not sure.”
But we know she loves princesses. And her favorite thing to do in the whole world?
Nawai (computer), “coloring.”
Nawai is using an Augmentative and Alternative Communication or AAC device. She calls it her talker.
She’s in 2nd grade and her speech therapist at school got it for her through the Department of Education. Using a mouse to manipulate a computer is something she could have never done prior to starting a half-million-dollar-a-year medication, which brought back some movement she lost as an infant because of SMA, Spinal Muscular Atrophy.
Wendy Irie said, “So I think it’s been helping her to stay healthy.”
For now, thankfully, they’re still on the pharmaceutical company’s free drug program. But I asked if there was any way Laulima can help.
Nawai’s mom explained, “It’s just so hard just to even ask for anything because everything is so expensive now and I think everyone can probably feel the pinch now so.”
But I asked about air quality concerns because of Mauna Loa’s eruption, as Nawai also likes to go outside.
They’ve stayed inside so far, where they have air purifiers. But with those and the medical equipment Nawai depends on, turns out electric bills have grown exponentially, even with their solar panels and HELCO’s medical discount program.
From $100 or less eight years ago to $350 a month now.
So, if anyone has extra or used solar panels they can donate those would be so appreciated.
If you’d like to help, please go to our website, look for local, then Laulima and ohana code B2299.
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Nawai’s mom said, “We appreciate you checking in on us, and we’re just thankful for people like you and people who support our family.”