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Saylah, Age 2

Kansas · Phenylketonuria (PKU)
Annual cost: $2400

My daughter has a milder form of PKU and therefore does not need as much formula to live a healthy life. However, as she gets older ...

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 ...

Lisa, Age 6

Indiana · Phenylketonuria (PKU)
Annual cost: $3000

We adopted Lisa last year. Prior to that she was in Florida. Due to the low amount covered in Florida Lisa was on a very limited diet. ...

Max, Age 17 months

Colorado · FPIES
Annual cost: $3240

My son, Max was diagnosed with FPIES after I stopped breastfeeding and he started on milk-based formula and we started introducing ...

The Smiths

Arizona · Phenylketonuria (PKU)
Annual cost: $12000

Our family is unique, in that I have PKU as well as our four adopted sons. With no guarantee of insurance coverage, I fear that my ...

Emily, Age 18

Ohio · Phenylketonuria (PKU)
Annual cost: $2400

My name is Emily and I am 18 years old with Phenylketonuria. I would have to admit that sticking to a strict diet of 256 Phe a day is ...

Hannah

Maple syrup urine disease · New York
Annual cost: $1440

We are self-insured. We have had to change health insurances every year for the past several years because the insurance company went ...


Laryssa

New York · Phenylketonuria (PKU)
Annual cost: $7200

Passing this law would mean a lot more money to go around. Better health for me which makes me better for my ...

Zoe, Age 4

Phenylketonuria (PKU) · Tennessee
Annual cost: $4200

We adopted our beautiful daughter Zoe three months ago from China. We did extensive research on PKU and prepared ourselves the best we ...

Seton, Age 3

FPIES · Wisconsin
Annual cost: $3600

Our son was diagnosed with FPIES at around 7 months of age. He is intolerant or allergric to upwards of 40 foods. Even at the current ...

Maximus, 9

Missouri · Phenylketonuria (PKU)
Annual cost: $30000

Earlier this year we experienced what not being able to afford formula & medications or have no insurance coverage is like for so ...


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 ...

Alice, 1

Maryland · Phenylketonuria (PKU)
Annual cost: $1800

Medical nutrition coverage has significantly reduced the cost and strain on our family’s income for our daughter’s food. ...


Audrina, Age 8

North Carolina · Phenylketonuria (PKU)

My daughter was diagnosed with PKU at one week old. The moment that doctor called us it changed our lives forever. The metabolic ...


Nicholas, Age 3

Michigan · Phenylketonuria (PKU)
Annual cost: $12000

Having medical foods coverage would lessen the burden of worrying about the special foods our son will need as he grows up. While we ...

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