Mom of Sons with PKU Says Slow Process of Switching Formula Not an Option: 'We Don't Have Weeks Left'

·3 min read
Alexa Biechler
Alexa Biechler

The Moody Momma

Alexa Beichler knows she's running out of time — and medical-grade formula — for her boys.

But unlike other parents who have been forced to find alternate formula as the nationwide shortage rages on, Beichler's options are limited as both of her children were born with a metabolic condition called classic phenylketonuria (PKU), in which their body is unable to process an amino acid found in protein.

The lifelong PKU diagnosis requires the boys to be on medical formula as part of a specialized diet that limits them to two grams of protein a day for the rest of their lives.

"I will never find their formula at any grocery store or at any pharmacy," she tells PEOPLE exclusively. "It is not in any stores. You wouldn't be able to get it without a prescription."

"They live on this formula," Beichler adds. "They will have formula forever: they'll have it as teenagers, young adults, adults. That formula and their medical foods are how they get 100 percent of their daily intake nutrition."

Alexa Biechler
Alexa Biechler

The Moody Momma

RELATED: Mother Makes Heartbreaking Plea amid Formula Shortage as Sons Face Irreversible Brain Damage

Without the medical-grade formula, the protein in the boys' blood will quickly back up, acting as a neurotoxin in their brain, says Beichler.

"In a matter of days, they can go from being just fine to having permanent life-long brain damage. Their quality of life will go to zero as they lose their fine and gross motor skills. If it affects their brain, that will be forever and that, that, is terrifying."

As the Virginia mom desperately seeks answers to when a full shipment of both 6-month-old Jax and 20-month-old Taylor's formula will finally be available, she finds herself fielding suggestions from well-meaning strangers.

Alexa Biechler
Alexa Biechler

The Moody Momma

"Right now, we don't have a backup formula. So many people tell me to just switch their formula, but it's not that easy," Beichler says. "Kids with PKU are on this formula for a very long time — it is nasty and not even palatable for most people."

"There are school-aged kids that literally have to drink this formula out of a baby bottle because it puts it past all of your tastebuds — that's how gross this is," she explains. "Switching becomes a huge issue because these kids already have the taste for their particular formula. They've had it for so long, they don't know anything else."

She adds, "I know people that have had to switch one teaspoon at a time. They have their old formula and they put one teaspoon of the new formula in so they can start transitioning. That process takes weeks — and we don't have weeks left."

Alexa Biechler
Alexa Biechler

The Moody Momma

Beichler says her boys aren't the only ones in desperate need of the life-saving formula. On Sunday, President Biden announced that the first international shipment of formula was set to land, with enough to fill over half a million baby bottles, the Associated Press reported. But, Beichler says, families are already being forced to seek out alternative solutions to the shortage while they wait.

"Right now, everyone thinks infant formula is a big deal because 'normal' infants aren't getting their formula, but there are people out there that face these food insecurities daily," the worried mom says.

"Over the past month, stress and anxiety is all I've felt. I literally go to bed thinking, 'What are we going to do tomorrow?' "