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Renee

Illinois · Phenylketonuria (PKU)
Annual cost: $3000

My name is Renee. I am recently married in August 2017. I am currently on pre-con trying for our first child. My levels have been ...


Danielle, Age 3

Florida · SBS
Annual cost: $12000

Our beautiful happy and energetic three year old daughter Danielle was born at 35 weeks New Year’s Day 2016. She was diagnosed at ...


Dylan, Age 5

EOSINOPHILIC DISORDERS · Ohio
Annual cost: $18000

Diagnosed at 14 months. Husband was unemployed at the time, I was working. Went through every agency in Ohio for assistance on cost. ...

Asher, 4

Illinois · Phenylketonuria (PKU)
Annual cost: $1800

Asher is my happy, smart, funny, rambunctious four year old. He loves to play with tractors, his sister, swim, and eat! He loves ...

Owen

Arizona · Phenylketonuria (PKU)
Annual cost: $6000

Having medical coverage for formula and medical foods would be an enormous relief. Even though Owen is only 12, I have worried since ...

Drake, Age 3

Kansas · Phenylketonuria (PKU)
Annual cost: $6000

Our insurance covered the medical beverage for one year and then stopped. This was so terrible because we had no notice and the ...

Adysen, Age 11

Phenylketonuria (PKU) · Texas
Annual cost: $3600

Medical coverage for our family will mean less time fighting the insurance for coverage. They decide when and how they are going to ...


Ian, Age 12

3-Hydroxy-3-methyglutaric aciduria · Arizona
Annual cost: $3600

Having better coverage will will certainly lower our costs. To have to pay escalating insurance premiums plus the cost of formula and ...

Ben, Age 5

EOSINOPHILIC DISORDERS · Indiana
Annual cost: $4800

Though I’m on an employer plan, we contribute another $9000 a year to cover premiums for our 5 member family. That plan has a $6000 ...


Sabastian

Maple syrup urine disease · Nevada
Annual cost: $3000

It is really hard to have a child with a metabolic disorder. I pay over $600.00 per month for insurance coverage, It was prior to ...

Liza

Oregon · Phenylketonuria (PKU)
Annual cost: $8400

Because our employer plan is self-funded, and we have no other plan options through the company, I have no coverage for even formula ...

Sasha, Age 11

Florida · Tyrosinemia
Annual cost: $6000

My daughter was diagnosed with a genetic inborn error of protein metabolism at 15 months of age. Since that time, our daily life has ...

Pamela

Homocystinuria · Nevada
Annual cost: $3600

It would mean so much to have the medical nutrition equity act passed. I have a diagnosis of homocystinuria which was discovered very ...


Jane, Age 7

CROHN'S · Illinois
Annual cost: $3960

Jane is a happy and energetic 7-year-old child who lives with her parents and two siblings in Chicago, IL. She was diagnosed with ...


Juliana

New York · Phenylketonuria (PKU)
Annual cost: $2400

It would be such a relief for me to know that my daughter would always be able to afford her formula and medical food. My insurer will ...

Lelia, Age 2

Idaho · Phenylketonuria (PKU)
Annual cost: $600

For our family, the most meaningful part of medical nutrition coverage would be hope and confidence for the future. We have coverage ...

Ellie

Homocystinuria · Pennsylvania
Annual cost: $2400

Food is the most important thing to any mother who has an infant. While most mothers who have a two week old are just making sure they ...

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