Mom Issues Heartbreaking Plea Amid Formula Shortage As Sons Face Irreversible Brain Damage

When Alexa Beichler walked out of her front door in Leesburg, Virginia, on May 10 to bring in her scheduled delivery of medical-grade baby formula for her younger sons, she immediately noticed her shipment was not complete. The mom-of-three had called in an order of Nutricia formula for the boy days prior as her sons were both 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 diagnosis—determined at birth through the newborn heel prick test—requires children to be on a specialized diet that limits them to two grams of protein a day.

However, as Beichler counted out the cases of specialized formula, she realized her middle son Taylor's supply was missing. "Sheer panic set in. I was like, 'Why am I missing two more huge boxes of Taylor's formula?'" the worried mom told PEOPLE. It was then that it dawned on her that the nationwide formula shortage had finally arrived at her doorstep, Beichler shared. Unfortunately, unlike other desperate parents who have been frantically searching the shelves of their local grocery store, Beichler's options are extremely limited as the prescription-based formula can only be supplied through the manufacturer.

"I called them and they're like, 'Oh sorry, that's on backorder.' I was like, 'What? Was anyone going to tell me? What am I supposed to do?'" she revealed. "I hung up the phone and immediately sent an email to our doctors, but no one had any answers. They still don't have any answers. We have about a two-week supply left." Almost 90 percent of Beichler's sons', 6-month-old Jax and nearly two-year-old Taylor, daily nutrition comes from the family's dwindling supply of medical formula. The concerned mom is terrified that the results will be devastating and irreversible when her sons run out of their specialized formula soon.

"Our days are numbered. We have two weeks before we're out of formula. I'm trying not to freak out. I'm trying not to think about it," Beichler said. "I'm trying to get through each day as fast as I can and do what I need to do. The worst part is not knowing what's next. 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?' It's not like I can give them cow's milk because that's too much protein. I can't pour extra water in their formula to stretch it. There's literally nothing I can do. I am helpless. I've done everything in my power that I can possibly do."

Beichler explained that the protein in the boys' blood will quickly back up—acting as a neurotoxin in their brain—without the medical-grade formula, "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," she explained. "There's black market trading going on even though this is all prescription. It probably shouldn't be happening, but we're not going to let our kids go through this. We're doing everything we can as a community to step up and support each other."

"People are now turning to drinking expired stuff. There's nothing left. They're thinking this is probably better than nothing. That's a really scary thought," added Beichler, who is active in the online PKU and metabolic groups. She confessed that the weeks of stress and the unknown are taking a toll on her and her husband Ian, a public school teacher. "When my husband gets home, I go upstairs and collect myself so I can get through the rest of the night," she said. "We're literally living day-to-day right now. We're out of time."

References:

https://people.com/parents/mother-heartbreaking-plea-amid-formula-shortage-sons-with-pku-face-irreversible-brain-damage/

Representative Cover Image Source: Getty Images/Milan_Jovic