My insurance as a NYC public school teacher covers Emily’s medical formula only. But it is never easy. Every year there is a question if they will continue to cover it. They do not cover any medical food ever. I
Read moreInborn Errors of Metabolism and Conditions on the RUSP
Will, Age 12
![Will, Age 12](https://nutritionequity.org/wp-content/uploads/sites/12/2018/09/0AD99394-3EFD-4976-802E-44060481A836-e1538146255437.jpeg)
This coverage would take away added stress on our family and thousands of others. I have the means to afford insurance, but it does not help with procuring formula. Why do we pay so much for so little?? Why have
Read moreSasha, Age 11
![Sasha, Age 11](https://nutritionequity.org/wp-content/uploads/sites/12/2018/09/1C0453E0-DAC3-4A2F-BDF2-E14C237E5D1B.jpeg)
My daughter was diagnosed with a genetic inborn error of protein metabolism at 15 months of age. Since that time, our daily life has been dominated by an acute awareness of the critical importance of Sasha’s nutrition (and the incredibly
Read moreKelsey, Age 25
![Kelsey, Age 25](https://nutritionequity.org/wp-content/uploads/sites/12/2018/09/BU-Grad-e1538146666602.png)
I have a medical condition called Phenylketonuria (PKU). PKU is an inherited metabolic disorder where my body cannot break down phenylalanine, an amino acid found in protein. Therefore I live on a very restricted low protein diet consisting of mainly
Read moreAdysen, Age 11
![Adysen, Age 11](https://nutritionequity.org/wp-content/uploads/sites/12/2018/09/E6EEC1A0-0B83-4BD8-ACAA-60D00E08DBB7.jpeg)
Medical coverage for our family will mean less time fighting the insurance for coverage. They decide when and how they are going to cover it on a month by month basis. She is on one required medical food but uses two
Read moreElliot, Age 2
![Elliot, Age 2](https://nutritionequity.org/wp-content/uploads/sites/12/2018/09/IMG_20180807_110410a-e1538147756844.jpg)
Elliot was diagnosed with PKU at 6 days old. He is a happy, energetic and loving 2 year old. We are fortunate enough to have formula currently provided to us by the state, although this is not guaranteed to continue
Read moreMason, Age 2
![Mason, Age 2](https://nutritionequity.org/wp-content/uploads/sites/12/2018/09/CAD585D1-8227-465A-9397-354B8881EF43.jpeg)
Mason is our second child and our only with PKU. Like many others we had never heard of PKU until our son was diagnosed through the newborn screening. We are so grateful for the early detection that will allow Mason
Read moreMarisa, Age 10
![Marisa, Age 10](https://nutritionequity.org/wp-content/uploads/sites/12/2018/09/20180719_113125-e1538148347368.jpg)
Our 10 year old daughter Marisa has Phenylketonuria (PKU). She is only able to have 5 grams of protein a day from regular foods. She gets 40 grams of equivalent protein from her medical formula a day. She does not
Read moreEmily, Age 18
![Emily, Age 18](https://nutritionequity.org/wp-content/uploads/sites/12/2018/08/Snapchat-1434178192-e1534781938742.jpg)
My name is Emily and I am 18 years old with Phenylketonuria. I would have to admit that sticking to a strict diet of 256 Phe a day is not the easiest thing to do. There are so many foods
Read moreJalen, Age 5
![Jalen, Age 5](https://nutritionequity.org/wp-content/uploads/sites/12/2018/08/jalen.jpg)
My state gives us formula covered which is the biggest blessing but my daughter is just now getting ready to start foods. I am a stay-at-home mom because I’m worried someone will feed her the wrong things. We are scared
Read moreHarper, 18 months
![Harper, 18 months](https://nutritionequity.org/wp-content/uploads/sites/12/2018/07/B6881E8D-EBE6-4395-9289-3BE4641B62AD-e1532277262804.jpeg)
My daughter is a vibrant 1.5 year old. She currently requires about 9 cans of formula a month, which will only increase as she gets older. I have no idea how we’ll be able to afford her formula if we
Read moreStephanie, 12
![Stephanie, 12](https://nutritionequity.org/wp-content/uploads/sites/12/2018/07/amy-11.jpg)
Our oldest daughter Stephanie was born with PKU. The costs for her food and supplies is very costly! We as parents do what we can do for our children. My husband works long hours and has very few days off
Read moreMaximus, 9
![Maximus, 9](https://nutritionequity.org/wp-content/uploads/sites/12/2018/06/77BFFC3E-EDD2-495D-B51E-56AE066B3449-e1532278141971.jpeg)
Earlier this year we experienced what not being able to afford formula & medications or have no insurance coverage is like for so many. Our son Maximus 9 y/o noticed a taste difference in his formula & refused to drink
Read moreNew York Teen, 17
My greatest worries are what happens if my husband’s job comes to an end and we can’t afford the medical formula/foods or can’t afford insurance. More importantly, what happens when my son has to start taking care of these expenses himself.
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