Draegen, Age 18

Phenylketonuria (PKU) · Texas
Annual cost: $6000

When my son, Draegen, was younger, he was on Medicaid. It covered his formula, but only a very specific kind. He ended up burnt out on ...

Jamus, Age 9

FPIES · Nebraska
Annual cost: $1200

My son, Jamus, has FPIES plus and our medical team thinks he has something that doesn’t even have a name put to it yet. He will turn ...

Colton, Age 6

Ohio · SBS
Annual cost: $16800

Colton is almost 7 years old. He was born at 30 weeks and lost 2/3 of his small bowel due to a mid-gut volvulus. He has been on an ...


Ezra, Age 3

Oklahoma
Annual cost: $4200

The formula is very expensive!…My Grand-daughter and her husband both work and with all the bills cannot afford the formula ...

Ryan, Age 3

Phenylketonuria (PKU) · Utah
Annual cost: $2400

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 ...

Anthony, 1

Phenylketonuria (PKU) · Texas
Annual cost: $9000

Earlier this year we took custody of our grandson Anthony. He was diagnosed after birth with PKU. He has lived with us since birth, ...


Mark, Age 61

Pennsylvania
Annual cost: $7500

So far Mark’s medical nutrition has been covered after the out of pocket maximum is met (this year it is $7,450). But we never ...


Sarah, Age 50

Phenylketonuria (PKU) · Washington
Annual cost: $14400

Hello, I am a 50 year old Phenylketonuria patient at the UW Medical Center. I am one of the oldest patients in the PNW. My parents ...


Brooks, Age 9 monhts

FPIES · Illinois
Annual cost: $600

My son was hospitalized at 7 weeks old due to a reaction. At the time it was determined the common cold sent him into near shock. He ...


Ashley, Utah Metabolic Nurse Practitioner

Inborn Errors of Metabolism and Conditions on the RUSP · Provider Stories · Utah

Medical food practice affects our practice in several ways. First, and foremost, our desire to bring the best possible care and ...


Sarah

Connecticut · Phenylketonuria (PKU)
Annual cost: $240

When our daughter was born, our two employer-provided insurances refused to cover her condition. One insurance was through the Ct. ...

Owen

Phenylketonuria (PKU) · Utah
Annual cost: $36000

Medical nutrition coverage would make an enormous difference to our entire family. We spent years in school to provide a good living ...

Hailey

Iowa · Phenylketonuria (PKU)
Annual cost: $12000

Meet Hailey…our second child and first PKUer. We thought having one child was expensive but having another with PKU is an ...

Maeve, Age 8

Phenylketonuria (PKU) · Texas
Annual cost: $3600

As all parents who experience it, we were overwhelmed once we got the call, at 5 days of age, that our daughter Maeve had been ...

The Medical Nutrition Equity Act will provide key support for those Americans who rely on medical foods to survive and thrive.