I have two boys with Phenylketonuria, ages 5 and 3. We moved recently from California to Washington state. In California we had state insurance coverage and it covered foods like pasta, bread mix, cake mix, tortillas. In Washington insurance companies
Read moreIan, Age 12
On top of the cost of formula, I have to buy specialty foods amounting to about $200 per month plus regular grocery store items for my son, fresh fruits and vegetables. Plus groceries for rest of family. My son will then age out of coverage per current policies. I worry about what will happen, will he have an occupation that will allow him to manage the cost?
Read moreJoey
Even in Massachusetts, to get coverage for formula and food it is an absolute nightmare collaborating with insurance companies, pharmacies and clinics. I have fear each month that there will be an issue with something and I will not be able to get food or formula for my son because of a paperwork mistake or miscommunication between providers.
Read moreKathy, Age 55
I’m almost 55 with PKU need I say more… okay was a sample for Kuvan and Lanephex. Amount others like 1st Pku camps!
Read moreElliott, 1 month
To have Elliott’s formula and medical nutrition (low protein foods) covered by insurance would be a huge relief. The formula is extremely expensive and we haven’t even gotten to the foods yet, but I’m sure those are not cheap either.
Read moreLaila, Age 12
![Laila, Age 12](https://nutritionequity.org/wp-content/uploads/sites/12/2018/05/9.jpg)
Our family is very grateful that Laila’s PKU was discovered with newborn screening. Once we were able to overcome the fear and shock of her diagnosis, the next step was to learn about what we could do to keep her
Read moreAddison, Age 4
![Addison, Age 4](https://nutritionequity.org/wp-content/uploads/sites/12/2018/05/20180510_081702-e1532362844687.jpg)
My husband and I opted to pay more out of pocket each month, for our portion of the monthly insurance premium to assure that Addison would have the best coverage offered. Even after we pay our monthly premium, we must
Read moreEvan, Age 13
It is extremely difficult to provide my child with enough food to keep him healthy by keeping his blood phenylalanine levels at recommended levels and also keep him from being hungry.
Read moreAudrina, Age 8
The metabolic disorder itself is such a challenge in learning and dealing with and then to have to worry about the funds to get the food, formula and medical care she needs is another level of added stress.
Read moreChristopher
![Christopher](https://nutritionequity.org/wp-content/uploads/sites/12/2018/05/182114_466169480062854_1470501153_n.jpg)
I recently became ineligible for the Medicaid insurance I was on, I make just a little over the cap for income to be eligible. While I was on this insurance, my Formula supplement was covered but medical foods were not
Read moreBrynnslee and Brekelle
![Brynnslee and Brekelle](https://nutritionequity.org/wp-content/uploads/sites/12/2018/05/hands2014.jpg)
This precious picture was taken after the birth of my 2nd who also was diagnosed with PKU right after birth. It symbolizes the bond that these 2 sisters will always have..going through life facing all the food and medical issues
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