When she was just months-old Nawai Irie’s family was given a devastating diagnosis.
She was diagnosed with SMA, Spinal Muscular Atrophy. It robs her of the ability to move, even eat and breathe.
That was in 2015.
Fast forward to today and Nawai has just celebrated her fourth birthday, two years longer than her life expectancy and the family from east Hawai’i celebrated at a hotel on the west side.
“She just likes being somewhere different, getting out she likes to sleep on the princess bed, the hotel bed, she likes being by the ocean,” said Wendy, Nawai’s mother.
There is no cure, but a little more than a year ago, she started the first-ever treatment for SMA approved by the FDA and her mother says it’s like a miracle.
“Different body parts move more and seem stronger and now she can even sing along to songs that if she’s watching a cartoon or something,” said Wendy. “She can’t enunciate the words, but she has the respiratory strength to do that so, that’s big for us.”
The medicine is an injection take four times a year for the rest of her life, at a cost of $125,000 per injection.
The family got accepted into Biogen company’s free drug program so Nawai’s parents hope that will continue.
But even with the medicine there are setbacks and although it seems to have slowed the progression, SMA is still terminal, they could still lose her.
So when asked how people can help this holiday season, Wendy’s reply is simple.
“We really appreciate that people are still thinking about us and hopefully still praying for us because it really helps,” said Wendy.
She could also use help getting a few things Nawai needs like a reusable underpad, suction catheter connecters, tubing securement for Nawai’s gastrostomy tube and purifying essential oils.
Any little bit is a big help, and they’re so appreciative.
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