Family of baby with genetic disease requests wheelchair-accessible van, prayers

Laulima

One year ago, through our Laulima Giving Program, we brought you the story of baby Nawai Irie.

At only three months old, doctors gave her only two years to live. After our story first aired, there was an outpouring of support.

One year later, there is something else the family could use.

Now 15 months old, Nawai poses with her latest masterpiece, a gingerbread house. According to Nawai’s mom, Wendy Irie, she chose where to put the candies.

“She loves being around family and still she loves doing artwork,” Wendy Irie said.

When Nawai was born, there was no indication anything was wrong, but by Christmas last year, something was clearly wrong. She was losing her ability to move and by the end of the year, doctors diagnosed Nawai with spinal muscular atrophy (SMA) and gave her a life expectancy of just two years.

Nawai saw specialists at Kapiolani Medical Center for Women and Children in October.

“I think most of them are pretty pleased with how she’s doing so far and she’s been stable, so that’s a good thing,” Wendy Irie said.

But Nawai’s prognosis is the same.

“Even though her diagnosis is so devastating, we just want to enjoy every day with her,” Wendy Irie said.

Nawai’s parents didn’t ask for anything this Christmas. But when pressed, they said Nawai loves the outdoors and going to places, so a van that is wheelchair accessible that can handle all her medical equipment would be helpful.

“You have to order one from the mainland and a used one is like 40-something thousand dollars,” Wendy Irie said. “If there was someone here on the island that doesn’t need it anymore, then we could buy it.”

The family lives on the east side of Hawaii Island, but if there’s such a van on a neighbor island, somehow the Laulima Giving Program will get it there.

Other than that, they ask for prayers. It’s what gets them through, they say.

To help, click here and type “Nawai Irie” or “LS-116” in the description.

If you need assistance this holiday season, or want more information on the Laulima Giving Program, please call 808-393-4981 or email laulima@koka.org.

Copyright 2021 Nexstar Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

Trending Stories