Jordan

Phenylketonuria (PKU) · Washington

My story is a sad one. I am a parent of a PKU individual. My son was born June 17, 1985, diagnosed with PKU at 3 weeks of age. He was ...

Diego, Age 9

Illinois · Medical or Surgical Condition of Malabsorption · SBS
Annual cost: $12000

Diego is a happy and thriving 9-year-old boy from Chicago, IL with a history of intestinal atresia. This means that part of his ...

Nicole

Michigan · Phenylketonuria (PKU)
Annual cost: $4800

Coverage for medical nutrition for myself would mean freedom from worry and security that I will continue to be my best self. Without ...

Jennifer

Phenylketonuria (PKU) · Washington
Annual cost: $6000

The amount of medical debt my family has had to trudge through, during my 43 years of living with PKU, has been financially crippling. ...

Johnny, Age 4

Phenylketonuria (PKU) · Washington
Annual cost: $7800

Medical Nutrition coverage will ensure my son gets the formula he needs to grow and develop normally. I have been fighting for ...

Nico, 15 months

California · Phenylketonuria (PKU)
Annual cost: $3600

My son who is 15 months old was born with PKU. We have Cigna insurance which covers ZERO low protein medical foods and only covers a ...

Indigo, Age 5

Maple syrup urine disease · Washington
Annual cost: $4800

It scares me to think about our daughter not having access to her medical formula. This isn’t an option for her, her life depends ...

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 ...

Pat and Issac

Ornithine transcarbamlyase deficiency · Texas
Annual cost: $72000

Hi, I’m Pat and this is my son, Isaac, and husband/caregiver, David. Isaac is high functioning Autistic. I’m Type 2 ...

Samsynn, Age 1

North Dakota · Phenylketonuria (PKU)

I got pregnant while I was in high school and never finished. I was alone in my pregnancy and until he was 3 months old. I don’t ...

Canaan, Age 2

Georgia · Very long-chain acyl-CoA dehydrogenase deficiency
Annual cost: $10512

Canaan is a thriving, active 2-year-old boy with a rare metabolic condition called VLCAD. He lives with his parents in Georgia. He was ...

Walker, Age 5

EOSINOPHILIC DISORDERS · Georgia
Annual cost: $3000

We have many bills due to traveling out of state to help our 5 year see doctors that specifically help his condition. By not paying ...

Brynnslee and Brekelle

Nebraska · Phenylketonuria (PKU)
Annual cost: $4200

This precious picture was taken after the birth of my 2nd who also was diagnosed with PKU right after birth. It symbolizes the bond ...

Lucy and Lucas, Ages 6 and 3

Colorado · Phenylketonuria (PKU)
Annual cost: $6000

I have three children, my six-year-old twin daughters Lucy and Lily and my three-year-old son Lucas. Lucy and Lucas were diagnosed at ...

Will, Age 12

Phenylketonuria (PKU) · Texas
Annual cost: $12000

This coverage would take away added stress on our family and thousands of others. I have the means to afford insurance, but it does ...

The formula is very expensive!...My Grand-daughter and her husband both work and with all the bills cannot afford the formula (which is relevant in this disease)

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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 ...

Venetia

Louisiana · Phenylketonuria (PKU)
Annual cost: $6000

I have to be on Medicaid because I can not afford to get insurance on my own or thru my employer and it is very difficult to make ends ...

Hailey, Age 17

Georgia · Maple syrup urine disease
Annual cost: $4800

My insurance pays for amino acid modified formula but will not provide any coverage for low protein foods. Low protein food is very ...

Grace, Age 11

New Jersey · Phenylketonuria (PKU)
Annual cost: $1440

We have three beautiful children, two of which have PKU. We spend over $120 a month on medical formula, foods, and medication for PKU. ...

Benjamin, Age 1

Florida · Immunoglobulin E & non-Im­mu­no­glob­u­lin E-mediated allergies to food proteins
Annual cost: $7920

Because of the cost of desperately required essential nutrition (allergen free toddler formula) I have chosen to continue ...

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 ...

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 ...

Tyler

Massachusetts · Phenylketonuria (PKU)
Annual cost: $1020

Insurance covers formula (so many cans a month) and also covers up to $5000 of food during the fiscal year July-April. If during the ...

My pasta costs almost 10 times more than pasta bought at a local grocery store. My medical food should be looked at as medicine, not food. It is a requirement, not a choice.

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Kelly

Illinois · Phenylketonuria (PKU)
Annual cost: $15000

Having medical nutrition covered by the government would make life a lot more simple. I would have less stress and more peace of mind ...

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 ...