Illinois

Brooks, Age 9 monhts

My son was hospitalized at 7 weeks old due to a reaction. At the time it was determined the common cold sent him into near shock. He was also diagnosed with a cows milk protein and soy protein allergy, then

Having coverage for the food and formula would be absolutely amazing for our family. I would be able to make a career move making more money that would benefit us as I am a single mother. I have never been

Our 8 yr old has been on EleCare/hypoallergenic formula since he was 9 months old. His first 3 years of life, he went from no safe other foods to 3 kinds of fruits and beets that he could eat. Slowly,

We have 2 kids with PKU, so having coverage for medical nutrition would mean the world to us. My husband switched jobs for better medical coverage and we lived for 18 months with full medical food coverage. It was like

I am a full time lawyer working 60-70 hour weeks with two little children at home (3 yo and 12 months). I travel for work and often attend meetings where I cannot eat any of the catered food. Even going

My son began drinking Neocate junior at 12 months. It was not covered by our insurance. All formula is excluded from out plan because it is technically an over the counter product. He became tube fed at 16 months and

Better coverage for my son would alleviate the concerns about not being able to afford the medicine he needs . Insurance info: Our coverage keeps changing and it appears to be at the whim of the insurers. We need to

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

Asher is my happy, smart, funny, rambunctious four year old. He loves to play with tractors, his sister, swim, and eat! He loves fruits and veggies but relies on medical nutrition to provide him filling, rounded meals and snacks. It

My name is Renee. I am recently married in August 2017. I am currently on pre-con trying for our first child. My levels have been within range 2-4 so it is just a waiting game now. I have to struggle

Homocystinuria comes with the risk of heart attacks and strokes when not on diet. In college it was impossible to afford follow the diet while trying to afford rent, utilities, tuition, health insurance, other medication, car insurance and other bills.

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

Kelly

My pasta costs almost 10 times more than pasta bought at a local grocery store. My medical food should be looked at as medicine, not food. It is a requirement, not a choice.

Jane, Age 7

pkunews

Jane’s formula cost out of pocket for EEN was approximately $300 per month. Her team of health care providers attempted to obtain insurance coverage but was denied even after appeals were attempted.

Diego, Age 9

pkunews

Diego is a happy and thriving 9-year-old boy from Chicago, IL with a history of intestinal atresia. This means that part of his intestine did not develop before he was born. He was on total parenteral nutrition (TPN), nutrition through

My 3 year old daughter has classical PKU, with coverage for medical nutrition she would be able to eat more food instead of being hungry so often. Without medical nutrition she is very limited to the foods, she can eat,

Illinois

Brooks, Age 9 monhts

Denver, Age 12

Evan, Age 8

Jonathan (4) and Julia (5)

Nicole

Leo, Age 2

Joseph

Elliot, Age 2

Asher, 4

Renee

Danae

Denver, Age 10

Kelly

Jane, Age 7

Diego, Age 9

Riley