When our firstborn was just 7 days old, we received a call to rush him to the hospital. He had tested positive for PKU. We, including extended family, had never heard of PKU. The beginning of our journey was filled
Read moreInborn Errors of Metabolism and Conditions on the RUSP
Rebecca and Stephen
![Rebecca and Stephen](https://nutritionequity.org/wp-content/uploads/sites/12/2018/05/12189297_10208421801768183_5489619191893407609_o.jpg)
My name is Christy and I am a mother to 2 beautiful kids, both with PKU. My daughter, Rebecca, is 21 on Sunday and my son, Stephen, is 18. My entire world changed on June 14, 1997. That is the
Read moreLelia, Age 2
![Lelia, Age 2](https://nutritionequity.org/wp-content/uploads/sites/12/2018/05/lelia-e1532311568582.jpg)
For our family, the most meaningful part of medical nutrition coverage would be hope and confidence for the future. We have coverage for the moment (after going through the petitioning process with our insurance), but I worry what could change
Read moreKennedy, Age 9 months
![Kennedy, Age 9 months](https://nutritionequity.org/wp-content/uploads/sites/12/2018/05/A908266F-9710-43A8-927E-CDB9DFB5027C-e1532311754574.jpeg)
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
Read moreLinkyn, 18 months
![Linkyn, 18 months](https://nutritionequity.org/wp-content/uploads/sites/12/2018/05/linkyn-e1532312175232.jpeg)
My daughter was born with PKU, a rare metabolic disorder. Right now, we are lucky to have insurance cover her formula and medical food, but I worry about the future. If we did not have this insurance, we would not
Read moreLuke, Age 4
![Luke, Age 4](https://nutritionequity.org/wp-content/uploads/sites/12/2018/05/luke-e1532312455405.jpg)
My son is only 4. He has a whole life of this expensive cost of life, that he had no choice to live, to hover over him forever. He has such a low daily tolerance ( 260 mg of phe
Read moreNico, 15 months
![Nico, 15 months](https://nutritionequity.org/wp-content/uploads/sites/12/2018/05/nico-e1532312621990.jpeg)
My son who is 15 months old was born with PKU. We have Cigna insurance which covers ZERO low protein medical foods and only covers a small amount of his medical formula. We do not qualify for a state run
Read moreJordy, Age 1
![Jordy, Age 1](https://nutritionequity.org/wp-content/uploads/sites/12/2018/06/IMG_6786.jpg)
My son just turned one. Just over a year ago, our lives drastically changed when we found out our little guy has PKU. Since he’s still small, he doesn’t eat too much yet. However, as he grows and eats more,
Read moreZoey, 15 months
Our daughter must take a medication twice a day, drink medical formula and eat special medical foods in order to stay healthy. We are extremely lucky that our insurance covers a large portion but so many families are not as lucky as we are. Medical nutrition IS NOT AN OPTION.
Read moreZoey, Age 1
![Zoey, Age 1](https://nutritionequity.org/wp-content/uploads/sites/12/2018/05/zohio-e1532313158825.jpg)
We would be absolutely grateful if our daughter Zoey’s Medicaid insurance would cover her medical food, not just her formula. I believe children with PKU should be able to have both formula and food to be able to be successful
Read moreCanaan, Age 2
![Canaan, Age 2](https://nutritionequity.org/wp-content/uploads/sites/12/2018/05/canaan.png)
Canaan is a thriving, active 2-year-old boy with a rare metabolic condition called VLCAD. He lives with his parents in Georgia. He was picked up on the Expanded Newborn Screening at 6 days old and has done extremely well due
Read moreClaire, Age 8
![Claire, Age 8](https://nutritionequity.org/wp-content/uploads/sites/12/2018/05/claire.png)
I want to introduce you to my eight-year-old daughter, Claire. At first glance Claire appears to be a normal 2nd grader. She loves playing soccer, gymnastics, and playing with her brother and sister. She’s silly and funny and just a
Read moreEllie and Zay
![Ellie and Zay](https://nutritionequity.org/wp-content/uploads/sites/12/2018/05/elliezay.png)
Looking at this brother and sister pair, you don’t see anything besides two happy kids. Thankfully, Zay and Ellie are happy and healthy!! You would never guess that there is anything different about them, that is, until you sit
Read moreChristopher, Age 9
![Christopher, Age 9](https://nutritionequity.org/wp-content/uploads/sites/12/2018/05/lchad.png)
Christopher is a thriving, active 9 year old boy with a rare metabolic condition called LCHADD. He lives with his parents in Atlanta. He was the first baby with LCHADD to be picked up on the Expanded Newborn Screening in
Read moreSarah, Age 50
I am one of the oldest patients in the PNW. My parents were told to put me in an institution but they said no and found a pediatrician that put me in the first clinical trial for treatment of PKU.
Read moreNia, Age 3
![Nia, Age 3](https://nutritionequity.org/wp-content/uploads/sites/12/2018/05/20180506_163438.jpg)
Insurance covers my daughters medical formula but doesn’t cover her medical foods. If my daughters medical foods were covered it would help us out tremendously! Insurance believes it is not a necessity to cover medical food. Medical food is a
Read moreIsabelle, Age 2.5
![Isabelle, Age 2.5](https://nutritionequity.org/wp-content/uploads/sites/12/2018/05/E108D6F9-496C-4F09-A8EB-121C71488FA1.jpeg)
Isabelle has Classic PKU. She is 2.5 years old and can have 3 grams of natural protein per day. For context, one 8 oz glass of milk has 8 grams of protein – 2.5 times Isabelle’s daily allowance. Isabelle relies
Read moreHailey, Age 17
![Hailey, Age 17](https://nutritionequity.org/wp-content/uploads/sites/12/2018/05/0FA93D8A-C946-4D7D-8631-76389F4C3107.jpeg)
My insurance pays for amino acid modified formula but will not provide any coverage for low protein foods. Low protein food is very expensive. Sometimes my daughter has to go without foods she needs because we simply can’t afford it.
Read moreIndigo, Age 5
![Indigo, Age 5](https://nutritionequity.org/wp-content/uploads/sites/12/2019/03/981C941E-7799-41FC-854B-4F5EFB1979CA.jpeg)
It scares me to think about our daughter not having access to her medical formula. This isn’t an option for her, her life depends upon it and cost shouldn’t be a barrier for her or anyone living with a metabolic
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