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 moreMonth: May 2018
Elliott, 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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