The post appeared on Facebook, the last refuge of those with no other options.

"Our community is desperate," Kimberly Endrizzi wrote in her plea. "We have kids drinking expired formula because it's better than nothing."

She described how her 4-year-old son Greyson has a rare metabolic disorder called phenylketonuria, or PKU, and needs a special medical formula for 80% of his nutrition. With formula of all kinds in short supply, parents of babies and kids with medical conditions like Greyson's are in a particularly horrifying predicament.

Parents of kids with PKU can't simply switch formulas. Many have only tasted one variety their entire lives, and change is a long, difficult process of measuring out a tablespoon at a time of new PKU formula. Children, as they are wont to do, sometimes refuse to drink it.

Without the nutrition in the formula or if they get too much protein from other sources, toxins build up in their brains, leading to permanent, irreversible brain damage.

At the start of the shortage, Endrizzi tried switching Greyson's formula, but he refused to drink, and his protein levels shot up dangerously. They decided to keep him on the kind he would drink but had to ration it due to the short supply. Greyson began behaving differently, curling up on the sofa in tears or lashing out in frustration.

"We have watched our funny and energetic boy turn into a sad, angry and confused shell of himself," Endrizzi wrote.

Another mom of children with PKU, Alexa Beichler, told me that after she and her husband were forced to change the formula for their 20-month-old son Taylor, he began mistrusting everything his parents gave him to eat and drink. He won't drink all of the new formula.

"He's skeptical of everything now," she says.

Beichler explained that when a child is undernourished, the body begins to consume itself for the required calories. That process creates protein, which in kids with PKU, acts as a neurotoxin.

"It's terrifying," she said.

Taylor now has headaches and tries to bang or hit his head to alleviate the pain. They cannot explain to their toddler how dire the situation is, cannot bribe or persuade him.

Before the invention of special PKU formula, kids with the disorder often wound up nonverbal, Endrizzi said.

"A lot of them would be institutionalized," she told me on the phone.

Greyson is supposed to have five packets of his special formula, which is made by the company Nutricia, a day. They rationed him down to three during the shortage.

"We have one packet left," she tearfully told me Monday.

Sol Flores, the deputy governor in Illinois, the state where Endrizzi lives, learned of Greyson's situation and spent hours on the phone that same day trying to get his family more formula. Nutricia sent 18 packets that night, and after Illinois Sens. Tammy Duckworth and Dick Durbin contacted them, sent two more boxes via next-day mail.

Greyson now has enough formula for about two weeks. What happens next is unclear.

Nutricia representatives say they hope to restock most of their metabolic formulas early this month and expect to fully meet demand by mid-June. The Federal Trade Commission is investigating the causes of the formula supply chain disruption. The Food and Drug Administration met with Nutricia recently but wouldn't share the results of what they called an "internal meeting."

I'm left wondering why it's taken such extraordinary efforts — and the pull of governors and senators — to feed sick kids.

In the meantime, parents of children with PKU wait, in fear, not knowing whether they'll get the next formula delivery in time. They watch as their children literally starve, paying the price for our collective failures to anticipate and slowness to act.

It's the sort of tragedy that seems impossible in 2022, when billionaires build personal rockets and the advances of technology appear never-ending.

For her part, Beichler said she's sent formula to other families with PKU, ones who've posted the same kind of desperate pleas as Endrizzi's. As bad as the Beichlers' situation is, her heart goes out to others who have it worse.

"We did what we could," she said. "It's all been so miserable."

To learn more about Georgia Garvey, visit GeorgiaGarvey.com.

Photo credit: FotoRieth at Pixabay