Laulima: Family in need following infant’s devastating diagnosis

Courtesy of Wendy Irie

You may know our Laulima Giving Program through our holiday push to help families who need a helping hand.

But the needs are year-round, and KHON wanted to introduce you to little Nawai. Her parents married after several years together and last February their dream came true.

“Right after the honeymoon we found out we were expecting and so we were excited, because we were a little bit older,” said mother Wendy Irie.

And on September 23, 2014, Nawai Chiemi Lurma Irie entered this world at Hilo Medical Center, and into the hands of love.

She was healthy, happy and sucking on her fingers at 2-weeks-old.

“At about a month old I noticed some physical delays and I thought okay, maybe she’s a little delayed,” said Wendy.

By 2-months-old, Nawai’s muscles were weak, her limbs became limp, and then at 3-months old, on December 30, Nawai’s pediatrician confirmed she has a genetic disease for which there is no cure called SMA, or spinal muscular atrophy, and her prognosis was devastating.

“Your daughter will never be able to sit up, crawl, walk, she’ll probably have respiratory distress and her life expectancy is probably gonna be til 2,” said Wendy.

In January Nawai was admitted to Kapiolani Medical Center.

Wendy stays here on Oahu but the child’s father Jamie had to go back to work on Hawaii Island. He does comes back on weekends when he’s not on call.

Through it all, Nawai’s mind is sharp and often times you can see happiness.

“She’s so willing to give a smile, she’s the joy of my life,” said Laurie Ohashi, Nawai’s grandmother.

A family friend, Jennel Sesoko, who also happens to be a Laulima donor, contacted Keiki O Ka Aina, KHON’s partner in the Laulima Giving Program.

“She’s just adorable, just this cute little chubby baby girl, but she’s in the intensive care unit hooked up to all these monitors and being a mom myself your heart just drops,” said Sesoko.

To help, you can mark your calendars for a Family Fun Day fundraiser in Hilo at Liliuokalani Garden on May 9.

You can also e-mail laulima@koka.org, or call Keiki O Ka Aina at (808) 843-2502. Nawai’s ohana code is LS – 116.

Nawai’s doctors say the family could use solar panels because electric bills will skyrocket at their Keaau home with all the medical equipment.

And yet, when KHON asked Wendy how people can help and what her family needs, she responded saying: “Honestly I think right now prayers have been really helpful I think that’s what’s been holding me up or our family up anyway.”

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