Last month, Beichler spoke to PEOPLE about her two sons, Jax, 7 months, and Taylor, 21 months, both of whom were born with a metabolic condition calledclassic phenylketonuria(PKU), describing theirreversible brain damagethat could set in if her boys didn’t have access to their medical-grade formula. (Her oldest son, Carson, 4, does not have the condition).
The lifelong PKU diagnosis requires the boys to be on the special formula — which can’t be found in grocery stores or pharmacies — as part of a specialized diet that limits them to two grams of protein a day for the rest of their lives. And without their formula, the protein in the boys' blood will quickly back up, acting as a neurotoxin in their brain, says Beichler.
As of Tuesday, Beichler tells PEOPLE her family received a full shipment on June 16 of the specialized formula which is what her boys are currently relying on. Prior to the recent delivery, the last complete shipment she received was on April 5.
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The Moody Momma
“The boys are doing really good. Taylor was actually having a really tough time transitioning so it was a big, big thing that we got that shipment because Taylor was not doing well,” says the Virginia mom.
“This formula is so important to him because it’s all the daily vitamins and nutrients that he gets. It’s very important that he drinks all of it or else these bad things can happen like brain damage and other issues,” she continues.
Beichler says the June 16 shipment is supposed to last her boys until the end of July. While her boys are “doing so good,” the mom of three says her family is “still dealing with a lot of delays and everything is so up in the air.”
“[The formula manufacturer plant] said to prepare for more delays and more issues because not only are they out of the stuff to make the formula, they’re out of the foil packets,” she adds. “We’re still living day to day and doing what we can, trying to save as much formula. It’s still an ongoing thing and I can’t push that enough.”
While there are still a lot of unknowns when it comes to Beichler’sfuture formula shipments, she can’t help but feel grateful for the “outpouring” of love and support since sharing her story with the world.
“It was so amazing,” she continues. “Not only did we spread PKU awareness but we were also able to shed light on other people and other disabilities that need formula. It was such a beautiful thing.”
“We’ve received so much love and so much care from so many people. I can’t put into words how thankful we are for shining a light on our story.”
source: people.com
