Phenylketonuria (PKU) is an inherited disorder that increases the levels of a substance called phenylalanine in the blood. Phenylalanine is a building block of proteins (an amino acid) that is obtained through the diet. It is found in all proteins and in some artificial sweeteners. If PKU is not treated, phenylalanine can build up to harmful levels in the body, causing intellectual disability and other serious health problems.
I have phenylketonuria and am required to eat low protein foods and drink a formula supplement daily FOR LIFE. Without these items I ...
I have two sons and only Leo has PKU. We maintain a low protein diet for Leo, but due to the high cost of low protein medical foods, ...
Having medical food coverage would expand our daughter's ability to try new and different foods. Her diet is supervised by a metabolic team of healthcare professionals at a specialized genetics/metabolism clinic in our state. This is not just for fun or because she wants to eat a certain way, This is to help her grow and develop properly.
Having medical food coverage would expand our daughter’s ability to try new and different foods. Medical foods such as rice, ...
I was born with CPKU as well as my twin sister. We will die with CPKU too unfortunately. It isn’t anything you have a chance of ...
We have 2 kids with PKU, so having coverage for medical nutrition would mean the world to us. My husband switched jobs for better ...
We spend every day planning and preparing. Not only what our daughter will eat today and in the week ahead but also for her future. ...
Coverage for medical nutrition would be a huge blessing to me and my family, and also many other individuals with PKU especially ...
Having coverage would make sure that my baby will always have the food and formula she needs throughout her life to have a healthy ...
Our PKU story is just getting started. We are older parents now. At ages 45 and 37, we decided to have a baby. We had just gotten ...
What would having coverage for medical nutrition mean to me, to my family? Everything!! The options of being nutritionally satisfied ...
When Krew turns 6 and is no longer covered by the state metabolic program, we will have to seriously consider moving to a state with ...
Having a child with PKU is extremely time consuming! I am always preparing special food for him and making sure he has what he needs ...
His medical formula/milk costs about $130 a can. He goes through about 5 cans a month. Thankfully that’s currently covered under ...
When I think of our little guy and how important it is for him to follow a structured diet, I don’t want financial limitations to be the reason of failure.
Finding out your little one has a life changing condition at birth can be a whirlwind. Self Discipline is something that is mandatory ...
Clark is 3 years old, and has a twin brother. He is as rambunctious and full of energy as any 3 year old boy could be. He’s the ...
I actually have two daughters with PKU. My grocery and monthly expenses is double what the average family pays. Medical bills have ...
Because of the cost of medical nutrition, we sacrifice many other things. We are blessed to have always been able to afford medical ...
Hi, I’m Jack and I’m 23 years old, still on my parent’s insurance. This is the first year my formula has been ...
My kids have been on their diet their entire lives (we have three kids with PKU) and now at a crucial time (maternal age), she can not ...
Having three children with PKU is an unbelievable blessing. We had never heard of PKU before Zach was born and just a few days after ...
Because our employer plan is self-funded, and we have no other plan options through the company, I have no coverage for even formula ...
Coverage would give our family peace of mind. My youngest daughter, Hailey, has PKU. Everyday, she is required to drink a very ...
If there were no issues with getting medical formulas and medical foods, the stress of worrying would go away. As a child, we had no ...
Thirteen years ago our Daughter was born with Phenylketonuria (PKU). Since then for our family of seven we have begun the upward ...
I was born in 1990 with PKU. My parents were told to expect severe disabilities. We need these medical foods for our everyday lives. ...