I was born in 1990 with PKU. My parents were told to expect severe disabilities. We need these medical foods for our everyday lives. The prices of these foods are outrageous $11.49 for ONE box of medical pasta. These medical
Read moreInborn Errors of Metabolism and Conditions on the RUSP
Alexandria, Age 16
![Alexandria, Age 16](https://nutritionequity.org/wp-content/uploads/sites/12/2019/04/1B2E0BC2-D58B-4A14-8B76-E59DBCCE59CD-e1556639689888.jpeg)
Ally was diagnosed at ten days with brain growth affecting diet based treatment PKU. She has been a resident of SC since she was six weeks old. Thanks to medical food and strict diet adherence she is a bright, lively,
Read moreSaif, Age 5
![Saif, Age 5](https://nutritionequity.org/wp-content/uploads/sites/12/2019/04/20190423_112553_009-e1556639597370.jpg)
Hi, I am only 5 years old now and my parents struggle to provide the right food for me for my special diet. Coverage would mean now and when I get older I wouldnt have to pay for my food
Read moreDonovan, Age 11 months
![Donovan, Age 11 months](https://nutritionequity.org/wp-content/uploads/sites/12/2019/04/Snapchat-458089408.jpg)
Hello, I am the mother of a ten-month-old phenylketonuria patient. Having more help to get instant needs would be amazing. With having it three kids and only the youngest has PKU it has been hard to try and get just
Read morePatti Sue, Age 1
![Patti Sue, Age 1](https://nutritionequity.org/wp-content/uploads/sites/12/2019/04/20181228_191152-e1556634602871.jpg)
Having medical food coverage would mean that I would not have to worry about double insurance for our daughter, and fighting insurance companies and the billing department at our local children’s hospital about making sure they run the claims through
Read moreAidan, 9 months
![Aidan, 9 months](https://nutritionequity.org/wp-content/uploads/sites/12/2019/04/aidan-easter-e1556633564806.jpg)
Trying to keep your child healthy and also full without medical food is nearly impossible. The number of times you have to say “no” to a PKU child and the constant worry about running out of foods they can eat, or whether you will be able to afford it
Read moreClayton, Age 4
![Clayton, Age 4](https://nutritionequity.org/wp-content/uploads/sites/12/2019/04/3906-e1556633344598.jpeg)
Having the medical nutrition covered by our insurance would grealty imporve the options and the cost of the food that Clayton would be able to eat since he is only allowed to have 5g protein a day. With him only
Read moreWill, Age 14
I am 14. I need my formula to live and grow. I am an athlete and a good student. My formula and low protein foods are critical for my brain and body.
Read moreHattie (20 months) and Maxine (6 months)
![Hattie (20 months) and Maxine (6 months)](https://nutritionequity.org/wp-content/uploads/sites/12/2019/04/hattiemaxine-e1556633029801.jpg)
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 moreEllis, Age 12
We have spend hundreds of hours on the phone, writing letters and working with her doctors for our insurance to provide the medical nutrition needed for Ellis to stay at her healthiest.
Read moreJohnny, Age 4
![Johnny, Age 4](https://nutritionequity.org/wp-content/uploads/sites/12/2019/04/Johnny-2018-e1556631208644.jpg)
Medical Nutrition coverage will ensure my son gets the formula he needs to grow and develop normally. I have been fighting for accurate formula coverage his entire life. The insurance issues have not been resolved and he is almost 5.
Read moreDeckard, Age 1
![Deckard, Age 1](https://nutritionequity.org/wp-content/uploads/sites/12/2019/04/IMG_1398-e1554912415341.jpg)
My son has classic PKU and his food options are very limited. We rely heavily on medical foods to fulfill his dietary needs. It is a struggle to have the insurance company provide coverage for the medical formula and foods.
Read moreGrace, Age 11
![Grace, Age 11](https://nutritionequity.org/wp-content/uploads/sites/12/2019/04/family.jpg)
We have three beautiful children, two of which have PKU. We spend over $120 a month on medical formula, foods, and medication for PKU. If medical nutrition were to be covered, we could breathe easier knowing our children would receive
Read morePat and Issac
![Pat and Issac](https://nutritionequity.org/wp-content/uploads/sites/12/2019/04/20190224_163700.jpg)
Hi, I’m Pat and this is my son, Isaac, and husband/caregiver, David. Isaac is high functioning Autistic. I’m Type 2 diabetic. My husband recently has been hospitalized for pulmonary edema. My family is in and out of hospitals a lot
Read moreZoe, Age 4
![Zoe, Age 4](https://nutritionequity.org/wp-content/uploads/sites/12/2019/04/0BFA751D-549D-43C3-9808-67767AE206F3-e1554910191385.jpeg)
We adopted our beautiful daughter Zoe three months ago from China. We did extensive research on PKU and prepared ourselves the best we could to meet her needs. We live in TN and I was happy to see that formula
Read moreSue, Michigan Dietitian
When patients’ mental health deteriorates because they cannot follow their diet, they often lose their job and get incredibly frustrated with the system.
Read moreAshley, Utah Metabolic Nurse Practitioner
Our clinic’s desire to bring the best possible care and outcomes to our patients is directly related to their ability to get necessary medical foods. Many who are not able to get medical foods are not able to follow their restricted diets, leading to poor outcomes and disease associated morbidities.
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