Last year, KHON2 introduced you to Nawai Chiemi Lurma Irie.
At 2 months old, Nawai’s muscles were weak and her limbs became limp. At 3 months old, doctors confirmed she had a genetic disease called spinal muscular atrophy. It robs her of the ability to walk, eat, and breathe.
There is no cure.
Through our Laulima Giving Program, many in the community rallied around little Nawai and her family, but they could still use your help.
One look around the Irie home now and it’s clear, Nawai is not a baby anymore. There are tiaras on the Christmas tree and her gallery of artwork is expanding.
“Once in a while we let her taste food. She likes chocolate,” Nawai’s mother, Wendy Irie, said with a laugh.
But Nawai also needs countless machines, tubes, and constant care. When we first met Nawai, at 6 months old, she was given two years to live.
“The prognosis is still the same. So her life expectancy was to the age of 2, so she just celebrated her birthday in September, so she’s 2 years old now,” Wendy Irie said. “Either you choose to make it the best that you can or not, and so we’ve chosen to just be thankful for each day that we have for her.”
Wendy, her husband, and family are saving and holding fundraisers for a handicap-accessible van. They’ve found a reasonably priced one in Georgia, but it’s still tens of thousands of dollars, plus shipping.
They also know of a communication tool called Eyegaze that can help Nawai communicate, and there is hope in an FDA-approved treatment, though it’s not likely to be covered by insurance.
Still, Wendy Irie says, they share “overall happy feelings that she’s here to celebrate with us another Christmas, and I guess not only at Christmas, but just every day, we hope and pray for a miracle for her.”
In the spirit of Laulima, our many hands working together, we can make a difference for Nawai and her family. Click here to help.
“We’re just so thankful for them, because I don’t know if we’d be where we are now without their help,” Wendy Irie said with tears in her eyes. “We just appreciate everyone.”
If you need assistance this holiday season, or want more information on the Laulima Giving Program, please call 808-393-4981 or email firstname.lastname@example.org.