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Aimee F. | New York | Patient Age: 9 | Disorder: PKU

We are one of the lucky ones… We were cutting it too close every month with the amount of my daughter’s formula that was originally prescribed, even running out during months that were over 30 days, so our provider prescribed an extra can each month so we would never run out. Years later I have a small stock-pile in the basement of extra Phenex. It drives my husband crazy who is a neat freak to see these boxes, and I almost sent all our extras to Poland when the war in Ukraine started. I’m glad I did not! We are currently days away from running out of the only formula my daughter has ever known. She loves it, and it makes her feel comfort and satisfied. Imagine you had to drink 25 oz a day of a medicine to be healthy…for 9 years all day, this is her drink. Now, to ask a 9 year old to switch is so sad. To switch the flavor, the mouthfeel and the way it settles in her stomach. Will it change the way she feels? These kids are so so so limited on what they can eat, the flavors they can experience – to take one of their choices away – ESPECIALLY their medicine!! It’s more than “switch to a different formula.” So much more.