Meet Hailey…our second child and first PKUer. We thought having one child was expensive but having another with PKU is an entirely different ball game. See, Hailey is doing well; thriving in all aspects of life with much credit due
Read moreDraegen, Age 18
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When my son, Draegen, was younger, he was on Medicaid. It covered his formula, but only a very specific kind. He ended up burnt out on it and it became more and more difficult to get him to drink it.
Read moreGavin, Age 2.5
![Gavin, Age 2.5](https://nutritionequity.org/wp-content/uploads/sites/12/2018/06/6FDEBF0A-2907-4F29-9322-1D91A384956B-e1532286214226.jpeg)
Our sweet Gavin’s future depends on this crucial coverage. Without insurance coverage for his food & formula, we would be unable to afford our house payment. This coverage is essential to ensuring that he has as bright a future as
Read moreRobert, Age 11
![Robert, Age 11](https://nutritionequity.org/wp-content/uploads/sites/12/2018/06/8CB47AFB-05A4-45B2-B827-E882ECF97EB5.jpeg)
It would relieve a lot of stress and tension in our household. Having to pay out of pocket for my son’s formula has brought me to tears more than once. I make $17/hour. A can of his formula costs about
Read moreChristiana, Age 11
![Christiana, Age 11](https://nutritionequity.org/wp-content/uploads/sites/12/2018/05/IMG_0048-e1532287730831.jpg)
We are fortunate that in the State of Ohio our daughter’s medical formula is covered. Because she is a responder to Kuvan, we have been able to rely less on specialty low-phenylalanine foods but do still purchase low protein pasta.
Read moreEmma, Age 10
![Emma, Age 10](https://nutritionequity.org/wp-content/uploads/sites/12/2018/05/PKUPaintsessions2_Emma-before.jpg)
When Emma was first born my husband worked at Avaya and we had Aetna. They refused to cover her medical formula despite appeals with letters of necessity from her Doctors. My husband changed jobs and second company insurance also refused
Read moreDenver, Age 10
![Denver, Age 10](https://nutritionequity.org/wp-content/uploads/sites/12/2018/05/548ED98D-1481-49DA-A910-EDB0721053F1-e1532288075687.jpeg)
My son Denver appears to be a normal ordinary 10 year old boy until he wants something to eat, gets sick, or his PHE levels are too high. When he wants something to eat it must be low protein therefore
Read moreEmily, Age 6
![Emily, Age 6](https://nutritionequity.org/wp-content/uploads/sites/12/2018/05/A1D0A1EF-3049-47CF-A57C-88759A833535.jpeg)
Our Emily was diagnosed at 9 days old with Phenylketonuria (PKU). During the last seven years of her life we have had insurance completely deny her medically necessary formula after the age of 12 months. We have appealed, fought, had
Read moreOliver, 10 months
![Oliver, 10 months](https://nutritionequity.org/wp-content/uploads/sites/12/2018/05/20180524_113048-e1532295641254.jpg)
My son was a week old when we got the news that he has PKU. I had no clue what this was and didn’t realize just how serious it was until it was explained to me as do most people.
Read moreGian, Age 2
I am currently a foster mom to a 2 year old with PKU. We live in the state of NC where medical food is not covered. His food is very expensive & without coverage, it is nearly impossible to buy.
Read moreDrake, Age 3
![Drake, Age 3](https://nutritionequity.org/wp-content/uploads/sites/12/2018/05/E524E532-82BE-4C3E-A38B-7869A4862477-e1532296052315.jpeg)
Our insurance covered the medical beverage for one year and then stopped. This was so terrible because we had no notice and the insurance company acted like it wasn’t necessary. They cover the Kuvan medication which gives him more protein
Read moreBrayden, 5 months
![Brayden, 5 months](https://nutritionequity.org/wp-content/uploads/sites/12/2018/05/3B0FA93B-3978-4EF3-A5F2-553A269E96FA-e1527802916702.jpeg)
Having medical coverage would mean we could have more of a variety of foods for my son instead of relying on the same foods since we will have more money to spend on fresh foods.
Read moreMaeve, Age 8
![Maeve, Age 8](https://nutritionequity.org/wp-content/uploads/sites/12/2018/05/DD34C231-085C-4E30-9FFF-AD9BEC6612EB-e1532296212408.jpeg)
As all parents who experience it, we were overwhelmed once we got the call, at 5 days of age, that our daughter Maeve had been diagnosed with a rare metabolic disorder requiring a strict medical diet in order to prevent
Read moreIsla, Age 5
![Isla, Age 5](https://nutritionequity.org/wp-content/uploads/sites/12/2018/05/IMG_20180324_155855_029.jpg)
Having coverage for medical foods that my daughter requires is necessary for her success of her diet management! Without the only known management for PKU (low protein diet) my daughter would incur severe neurological issues and inability to complete daily
Read moreJackson, Age 6
![Jackson, Age 6](https://nutritionequity.org/wp-content/uploads/sites/12/2018/05/BE688698-B0CF-44A9-A0BF-EE8BBAE40094-e1532296545400.jpeg)
We reside in Kansas. Our son Jackson was born June 12, 2012, 5 days later the State of Kansas called with positive results for PKU from Jackson’s newborn screening test. I initially worked company that covered medical nutrition until Jackson
Read moreJessica, Age 36
![Jessica, Age 36](https://nutritionequity.org/wp-content/uploads/sites/12/2018/05/23795577_1536419749759933_3121409405824979247_n.jpg)
I am 36 years old and was diagnosed with PKU when I was 14 days old. At the time may parents were told that I could be taken off the diet at age 18 and that I might not be
Read moreAdler, Age 3
![Adler, Age 3](https://nutritionequity.org/wp-content/uploads/sites/12/2018/05/adler-e1532300048526.jpg)
Meet Adler! He is an amazing little boy that lives in rural Missouri with his Mom and Dad. Adler was diagnosed with PKU shortly after birth. With the help of his Mom, Dad and extended family his PHE levels have
Read moreSilas, Age 4 and Elijah, Age 7
![Silas, Age 4 and Elijah, Age 7](https://nutritionequity.org/wp-content/uploads/sites/12/2018/05/IMG_4531.jpg)
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 moreRebecca 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
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