Phenylketonuria (PKU)

Melissa, Age 26

I am a 26 year old with PKU. I am pregnant with my second child. Maternal PKU is so important because being off diet can cause harm to my unborn child. Having coverage for my medical nutrition would be financial

Having medical nutrition coverage would mean that I get to live my life without worrying. I’ve had to move to different states in the past for school and work, and my first thought is always, “Will my formula be covered?”.

Our BCBS does cover the Medical Formula for my daughter and does reimburse for low protein modified foods but this is never without a struggle. Michigan BCBS has their own form to submit for reimbursement for modified foods however it

Annabelle, Age 4

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.

Liam, Age 1

Children without access to formula and medical food struggle to keep their levels stable and deal with a myriad of issues from attention issues to brain damage.

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 outgrowing or recovering from. It is the most difficult and most expensive diet to

Imagine going to the store for peanut butter and the shelf tag says it’s $9.49 for 8 oz that will only last less than a week. 8 oz. is about 8 servings. Bread costs $13.99 a loaf. Kids love peanut

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

Briana was born in 1989 and there were not many supports for her then, both in medical assistance or low protein supplement and food choices. When we moved from Texas back to Oklahoma when she was a few months old

Having coverage for medical nutrition would definitely help our family financially ($500+ a month ends up taking a toll on the bank account), but would also give us peace of mind that our daughter will not have to fight for

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

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. Her specialty foods and formula will be a life long cost and we worry about

Coverage for medical nutrition would be a huge blessing to me and my family, and also many other individuals with PKU especially women. I am very blessed to have insurance through my dad that helps cover part of both my

Having coverage would make sure that my baby will always have the food and formula she needs throughout her life to have a healthy brain. We have been consistent in taking very good care of her health and this would

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 married in 2017, and we wanted to have a child together. We have

What would having coverage for medical nutrition mean to me, to my family? Everything!! The options of being nutritionally satisfied and not hungry without the extreme cost would completely change our lives. It would change the way we plan every

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 better coverage. It would break our hearts to take him and our other children away

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 to continue to grow. As we get closer to him turning 5, our only option

His medical formula/milk costs about $130 a can. He goes through about 5 cans a month. Thankfully that’s currently covered under Medicaid. The other $180 is buying special low protein foods to live within his PKU prescribed diet. There is

Tyton, 9 months

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.

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 pickier eater of the two, but he’s at the age where he

I actually have two daughters with PKU. My grocery and monthly expenses is double what the average family pays. Medical bills have made it hard to provide for basic needs for my family.

Because of the cost of medical nutrition, we sacrifice many other things. We are blessed to have always been able to afford medical foods, but as these children get older and need to provide for themselves, it is likely they

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 covered through my parent’s insurance, but we haven’t received a bill yet, so we’ll see how it works

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 obtain her medical food. She’s is tired, has headaches, feels like she is

Phenylketonuria (PKU)

Melissa, Age 26

Melissa

Bethany, Age 19

Annabelle, Age 4

Liam, Age 1

Kerri

Alexander, Age 3

Denver, Age 12

Briana

Libby, Age 5

Jonathan (4) and Julia (5)

Lena, Age 2

Chelsie

Scarlett, Age 2

Jolynn, 3 months

Aly, Sam, and Anna

Krew, Age 3

Ryan, Age 3

Levi, Age 2

Tyton, 9 months

Clark, Age 3

Hannah, age 18

Jackson, Sawyer, and Holland

Jack, Age 22

Kacie