Inborn Errors of Metabolism and Conditions on the RUSP

Briana

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

This bill would allow my girls to never have to worry about their formula. Our insurance says it’s covered but we need to meet our deductible. By the time we pay for it the year restarts.

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

Xander was diagnosed with MSUD at 4 days of life. We were in a hospital that did not know how to treat, was not prepared to treat, and mistreated the disease. At 11 days of life, the geneticist finally reached

Evan, Age 8

I am aware that we are some of the lucky ones in that we have great medical coverage via TRICARE. Others should be afforded the same opportunity for coverage

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

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 he was born, we were thrown into the deep end of the PKU life. When

Because our employer plan is self-funded, and we have no other plan options through the company, I have no coverage for even formula needed to maintain a healthy and functional life. Our family is in debt because of the out

Coverage would give our family peace of mind. My youngest daughter, Hailey, has PKU. Everyday, she is required to drink a very specific formula. This will be required every day, for the rest of her life. A can of powdered

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 medical coverage for formula, and so my parents had to pay out of pocket for

Thirteen years ago our Daughter was born with Phenylketonuria (PKU). Since then for our family of seven we have begun the upward financial battle to afford for the proper care and treatment of our child’s inherited metabolic disorder. Many insurance

Inborn Errors of Metabolism and Conditions on the RUSP

Briana

Keira and Victoria, Ages 5 and 7

Libby, Age 5

Jonathan (4) and Julia (5)

Lena, Age 2

Alexander, Age 3

Evan, Age 8

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

Zach, Madie, and Kai (14, 11, and 5)

Liza

Hailey, Age 1

Jessica

Charlotte, Age 13