By State

Declan, Age 11

When I was eligible for the Affordable Care Act, I “made too much money” since child support is added in for income for DE Healthy Choice Option through Medicaid. Therefore, I was informed that it would be at least $1600

I was diagnosed with Homocystineuria at age 3, (1974) when I rubbed Trisodium Phosphate (paint Thinner) into my eyes. They originally thought it was Marphan’s Syndrome but upon looking at my eyes closer they found out it was Homocystineuria. I

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 make a lot for my two jobs and I have another son. He

What would having had coverage for medical nutrition meant to me/my family? It feels like an insurmountable task to even try to answer this question. Looking back, it would have meant what felt like everything. It would have meant not

I’m a 30, soon to be 31 year old female who was diagnosed with PKU at 1 month old and currently reside in New Jersey. Growing up, formula was always covered by my mother’s insurance since that’s how it is

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. Once we brought Lisa home to Indiana we had no coverage for food.

My son began drinking Neocate junior at 12 months. It was not covered by our insurance. All formula is excluded from out plan because it is technically an over the counter product. He became tube fed at 16 months and

When Garrett was born at 9 lbs 4 oz, we could not have been more thrilled to have a such a fat, happy baby! When we received the call two weeks later that he tested positive for PKU, we were

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 birth with PKU, a rare, inherited metabolic disorder for which there is currently no cure. Their livers are

It’s very important having coverage for medical nutrition. We could not afford to pay out of pocket and have no private insurance. If, We didn’t have the state of Louisiana and Medicaid our child would be severely permanently brain damaged

My mother has worked as many as 5 jobs concurrently to maintain employer-provided insurance and has CONSTANTLY fought to keep me on a Medicaid waiver program, as they try to kick me off the program frequently. All of this and

Better coverage for my son would alleviate the concerns about not being able to afford the medicine he needs . Insurance info: Our coverage keeps changing and it appears to be at the whim of the insurers. We need to

My insurance as a NYC public school teacher covers Emily’s medical formula only. But it is never easy. Every year there is a question if they will continue to cover it. They do not cover any medical food ever. I

This coverage would take away added stress on our family and thousands of others. I have the means to afford insurance, but it does not help with procuring formula. Why do we pay so much for so little?? Why have

My daughter was diagnosed with a genetic inborn error of protein metabolism at 15 months of age. Since that time, our daily life has been dominated by an acute awareness of the critical importance of Sasha’s nutrition (and the incredibly

I have a medical condition called Phenylketonuria (PKU). PKU is an inherited metabolic disorder where my body cannot break down phenylalanine, an amino acid found in protein. Therefore I live on a very restricted low protein diet consisting of mainly

Medical coverage for our family will mean less time fighting the insurance for coverage. They decide when and how they are going to cover it on a month by month basis. She is on one required medical food but uses two

Ezra, Age 3

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)

Elliot was diagnosed with PKU at 6 days old. He is a happy, energetic and loving 2 year old. We are fortunate enough to have formula currently provided to us by the state, although this is not guaranteed to continue

Mason is our second child and our only with PKU. Like many others we had never heard of PKU until our son was diagnosed through the newborn screening. We are so grateful for the early detection that will allow Mason

Our 10 year old daughter Marisa has Phenylketonuria (PKU). She is only able to have 5 grams of protein a day from regular foods. She gets 40 grams of equivalent protein from her medical formula a day. She does not

Mark, Age 61

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 know year after year if it will be or not and January is always stressful not knowing if will be or not.

My daughter, Lyndsee, was diagnosed in January 2016 with a rare disease, eosinophilic esophagitis. Therefore, she has to live on a prescription formula, Neocate Splash. This is what keeps her alive. She currently has no other safe foods. Her formula

Stepping out of the Blue – (Bear with me for a moment, this will all make sense in the end) Where it all began: I located a new campaign for awareness that NORD started, The 7000 Mile Rare Movement. I

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 not the easiest thing to do. There are so many foods

By State

Declan, Age 11

Joanna

Samsynn, Age 1

Maren, Age 6

Kristy

Lisa, Age 6

Leo, Age 2

Garrett, Age 9

Lucy and Lucas, Ages 6 and 3

Tyson, Age 7

Andrew, Age 18

Joseph

Emily, 11

Will, Age 12

Sasha, Age 11

Kelsey, Age 25

Adysen, Age 11

Ezra, Age 3

Elliot, Age 2

Mason, Age 2

Marisa, Age 10

Mark, Age 61

Lyndsee, Age 13

Angelica

Emily, Age 18