Photo: The Moody Momma
Alexa Beichler knowsshe’s running out of time— and medical-grade formula — for her boys.
But unlike other parents who have beenforced to find alternate formulaas the nationwide shortage rages on, Beichler’s options are limited as both of her children were born with a metabolic condition calledclassic 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.
“Iwill never find their formulaat 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.”
The Moody Momma
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 momdesperately seeks answersto 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.
“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.”
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.”
“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 andanxiety is all I’ve felt. I literally go to bed thinking, ‘What are we going to do tomorrow?’ "
source: people.com
