I’m Elizabeth and I have Classic PKU. When I was five my drs and parents a took me off the diet and formula. I was fine till age 30. That’s when i started suffering from pku side effects and severe
Read morePennsylvania
Sebastian, Age 25
Medicare always denying coverage, constant. Medicare is very poor. EOB’s need improvements. I have a son that needs medical nutrition and without it he would have passed away years ago. Medicare always denying coverage, constant. Medicare is very poor. EOB’s
Read moreLeonard, Age 3
I have two sons and only Leo has PKU. We maintain a low protein diet for Leo, but due to the high cost of low protein medical foods, we spend a lot of our time cooking and finding alternative meals
Read moreElsie, Nearly 2
Prior to switching to my husbands employer benefits we paid $125 per month out of pocket for our daughters formula. When my husband brought home his welcome packet with insurance information in it we immediately flipped to the section about
Read moreHattie (20 months) and Maxine (6 months)
We have two beautiful daughters, Hattie (20 months old) and Maxine (6 months old) who were diagnosed with PKU at birth. Because of their PKU both girls require medical formulas in order to grow and develop on par with their
Read moreMark, Age 61
So far Mark’s medical nutrition has been covered after the out of pocket maximum is met (this year it is $7,450). But we never know year after year if it will be or not and January is always stressful not knowing if will be or not.
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Kennedy, Age 9 months
Kennedy was diagnosed with PKU at 5 days old. Left untreated this disorder can lead to serious brain damage. While we are very fortunate to have Kennedy’s formula covered, we will be burdened with hundreds of dollars in medical food
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