HONOLULU (KHON2) — The nationwide formula shortage isn’t only impacting infants. For one Hawaii Island family, it’s another type of medical formula that they desperately need that put a scare into them after it went on backorder.
KHON2 viewers first met Nawai Irie when she was just 15-months-old. Then recently diagnosed with Spinal Muscular Atrophy. She was given about a year to survive. The now 7-year-old has beaten the odds and just finished first grade.
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“She likes school, her friends, and stuff, but I think as you get higher in grades you have more tests and she doesn’t like that part,” Nawai’s mom, Wendy Irie laughed.
Nawai has plans for the summer break.
“Now that it’s getting warmer, she’s excited to go swimming,” Irie added.
Nawai requires Tolerex to get her nutrients. The Nestle-produced formula is an amino acid mixture that her mom Wendy says is the only way she can get the protein she needs. The family recently ran into a backorder of the prescription recently.
“Just even being on backorder is scary because I can’t just go to the grocery store and pick up food for her,” Irie said. “She has to be on this special amino acid diet and I also noticed other families with medically fragile children that are also in the same position, they can’t even get the formula for their kids.”
These medical formulas are expensive. Wendy says she usually gets it through her insurance provider, but out of pocket, it can cost $450 a box.
“When it’s on backorder or you can’t get it you would probably have to buy out of pocket and so we’re trying to buy a little bit out of pocket to that she doesn’t run out,” Irie said.
We recognize that many consumers have been unable to access infant formula and critical medical foods they are accustomed to using and are frustrated by their inability to do so. We are doing everything in our power to ensure there is adequate product available where and when they need it,
FDA Commissioner Robert M. Califf, M.D.
For now, Irie is doing everything she can to avoid a situation where she can’t feed her child.
“Just knowing that there are babies, medically fragile kids that can’t even get their food is just, sad and it’s really scary,” said Irie.
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If you’d like to help, Wendy is organizing a fundraiser on her Instagram page.