June 2018 Archives

Emalynn

When Emalynn was born and diagnosed with PKU, we had no idea what to expect or think. Luckily we were blessed with a bright happy 3 year old who does her best to understand this disorder, but her diagnosis has

We are a poor family. Aside from food stamps we don’t have anything else to help with regular food let alone medical food. over half of our money goes towards expensive foods in stores and trying to get as much

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

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

My daughter Breeze, was born with a metabolic disease, called PKU. PKU is a rare genetic disease. She is 1 of 15,000 PKUers living in the United States. We have medical insurance. I have spent hours on the phone with insurance about PKU medical

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.

New 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.

Our state has a state funded program for the formula. The Kuvan my daughter takes we are getting assistance through NORD (charity organization) based on our family size and joint income. Any medical food that we order are out of

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,

Food is the most important thing to any mother who has an infant. While most mothers who have a two week old are just making sure they are producing enough milk or getting enough formula, we were in the NICU

I had never heard of PKU until my two-year-old granddaughter was diagnosed. Fortunately, the state of Michigan pays for her medical formula, but nothing towards all the low protein foods that are required. Medical formula is covered by state of

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

The Smiths

pkunews

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

Medical nutrition coverage has significantly reduced the cost and strain on our family’s income for our daughter’s food. We spend hours making her special recipes a week and approximately $150 extra a month in order to buy specific gluten free

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

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.

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

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

Month: June 2018

Emalynn

Terry, 4

Asher, 4

Renee

Maximus, 9

Breeze, 6

Danae

New York Teen, 17

Lisa

Anthony, 1

Ellie

Piper, 2

Cooper, 10 months

The Smiths

Alice, 1

Hailey

Draegen, Age 18

Gavin, Age 2.5

Robert, Age 11