Stepping out of the Blue – (Bear with me for a moment, this will all make sense in the end) Where it all began: I located a new campaign for awareness that NORD started, The 7000 Mile Rare Movement. I
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
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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.
Read moreAnthony, 1
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Earlier this year we took custody of our grandson Anthony. He was diagnosed after birth with PKU. He has lived with us since birth, learning to care for someone with PKU has been challenging. My husband works out of town,
Read moreCooper, 10 months
![Cooper, 10 months](https://nutritionequity.org/wp-content/uploads/sites/12/2018/06/ED030B69-B55F-40A6-99D6-FB5731D74749-e1532282324154.jpeg)
We are lucky that my husband works for Google and has some of best health Insurance you can get but most are not so lucky. We had to request a GAP exception to get the foods covered which requires clinics
Read moreThe Smiths
![The Smiths](https://nutritionequity.org/wp-content/uploads/sites/12/2018/06/20180418_074244.jpg)
Our family is unique, in that I have PKU as well as our four adopted sons. With no guarantee of insurance coverage, I fear that my children will one day be forced into a situation similar to that they were
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