Virginia Mom, Who Has Two Sons With Rare Metabolic Condition, Shares Anxiety Amid Baby Formula Shortage

Virginia mother Alexa Beichler has two sons who require a special diet because of their rare metabolic condition and while she is challenged to manage this well, she recently shared her family's experiences with classical phenylketonuria (PKU) amid the baby formula shortage.

Speaking with People, Beichler said that her sons with classical PKU, Jax and Taylor, require a two-gram limit of protein intake a day because their bodies won't be able to tolerate and process well. Patients with this condition have just 10 percent of working enzymes in their body thus their food intake has to be measured and monitored.

For her boys to get the proper nutrients despite their diet limitations, Jax and Taylor have to drink medical-grade formula milk, called PhenylAde GMP, which provides the protein. The rest of their nutrients come from other food sources that are also measured and limited.

On top of Jax and Taylor's needs, Beichler has to also see through the needs of Carson, her 4-year-old. Carson does not have a rare metabolic condition but the mom still needs to make sure that Taylor won't eat Carson's food.

Beichler prepares different sets of meals for her boys. Unlike most mothers, she has to spend a longer time in the kitchen to provide their exact dietary requirements.

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Why Classical Phenylketonuria Patients Need Medical-Grade Baby Formula

Recently, however, Beichler had problems finding supplies for the medical-grade baby formula Jax and Taylor drink. She always gets PhenylAde GMP direct from the manufacturer because it's rarely sold at retail.

But when the mom called to replenish their supplies, she was told that the milk remains on backorders. Beichler realized they are in for a major problem. None of her sons' doctors could offer an alternative and their supply could run out in two weeks' time.

According to WFYI, PhenylAde GMP comes highly recommended for anyone with classical PKU, regardless of their age. Although it's considered "medical food," most insurance won't also cover its cost, adding to the challenges in the parents' finances.

However, it's something that the Beichler could never do away with because if her sons can't drink the milk they will likely suffer from life-long brain damage. The milk actually serves as a neurotoxin for their brains so that they won't lose their abilities.

"Their quality of life will go to zero as they lose their fine and gross motor skills," Beichler revealed. The thought of the irreversible effects terries the mom.

Alexa Beichler's Agony

Since the baby formula crisis in February, Beichler admitted that her stress and anxiety have been through the roof. She has sleepless nights knowing that their time is running out. She knows there is a black market for this special formula but she cannot risk buying the milk since this is doctor-prescribed.

In a statement, the manufacturer, Nutricia in the Netherlands said that they are doing everything possible with their U.S. counterpart, Danone, to increase the availability of the medical-grade baby formula for those with rare metabolic conditions. The company said that they are also in discussions with the federal government on how to best address this critical need, per Yahoo!

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