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Morgan M. | New York | Patient Ages: 11 and 12 | Disorder: PKU

The past month of formula shortage has been incredibly stressful for my family. Like many people with PKU, finding a formula that was palatable and tolerated three times per day every day was very challenging for my daughters. We finally got into a good place with my girls liking their formula and then it became back ordered. I cannot begin to explain the stress that accompanies the fear of running out of a product that is essential for the brain health of my children. I have been in a panic over this shortage. I’ve spent hours each week calling our supplier to find out if the formula is back in stock, calling my daughters’ dietician and begging her to find us more formula, and reaching out to kind and generous strangers on PKU Facebook groups to see if anyone had extra formula to share. Through the kindness of strangers, we were able to get some surplus formula as well as samples of other formulas to try. My daughters cannot tolerance the new, different formulas, so nightly as I mix up the formula that will nourish my kids the following day, I mentally take inventory of our diminishing supply. Please help us. Please help the PKU community. We are in a place of desperation.