KHON2 is once again partnering with Keiki O Ka Aina for our Laulima Giving Program. Every day, we’ll share a story of a family or someone who may be going through a rough time and could use some help this holiday season.
We’ve been following this particular Laulima family for nearly three years now.
This year, they almost lost their little girl, but you can help make sure that doesn’t happen again.
When Nawai was 3 months old, doctors diagnosed her with spinal muscular atrophy (SMA), a genetic disease without a cure.
They said she’d never sit, crawl, or walk, and will suffer constant respiratory distress.
Respirator machines at their home in Keaau on Hawaii island are a constant lifeline.
Mother Wendy Irie says they’ve learned to adapt, and there’s so much to be happy for.
“She’s actually doing really well. This year she turned three, which is amazing, since her life expectancy was until two,” Irie said.
Nawai is smart, strong-willed, and although she can’t speak, Mom says she’s a little sassy.
“She’s very much an expert at rolling her eyes now,” Irie said with a laugh.
September was a busy month. Not only did Nawai turn 3, but the family received a specially equipped van, for which they raised tens of thousands of dollars, so she can get out of the house.
She also started preschool, mostly through FaceTime, but she visits sometimes as well.
And in September, Nawai received her first injections of the first-ever treatment for SMA, approved by the FDA one year ago. It’s an injection she’ll need four times a year for the rest of her life.
It costs $125,000 per injection, but they applied for the drug company’s free drug program and were accepted.
“I cried when I found out that she was going to be able to get it, the treatment,” Irie said. “That’s a dream come true, because it’s a blessing, and now no other parent ever has to hear there’s no cure, no treatment, because now there is.”
Irie says the drug slows the progression of SMA, and hopefully stops it. She says many children in the drug trials gained strength, and even walked.
“We’ve actually already started seeing a little more movement,” Irie said. “I mean, it’s just small things, like her hands, feet, legs, and shoulder, but for us, that’s pretty amazing. That’s huge.”
They’re not out of the woods. In April, Nawai caught a cold and they almost lost her, so they’ve been saving up for a SoClean CPAP cleaner to kill germs and bacteria on Nawai’s breathing apparatus.
At $300, it’s not nearly as costly as the medicine or the van, but it will be instrumental in helping to prevent Nawai from getting sick again.
“It’s not easy, but she’s definitely a blessing, and we’re just thankful for everyone who’s been supportive of us over these past three years,” Irie said.
To help, click here and use the ohana code LS-398.
If you need assistance this holiday season, or want more information on the Laulima Giving Program, please call (808) 393-4981 or email email@example.com.