Inborn Errors of Metabolism and Conditions on the RUSP

Emily, 11

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

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

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

My state gives us formula covered which is the biggest blessing but my daughter is just now getting ready to start foods. I am a stay-at-home mom because I’m worried someone will feed her the wrong things. We are scared

I am a new mom and PKU adult, I rely on my medical food to provide myself and my son the necessary nutrition for everyday life. All throughout my pregnancy I was able to receive medical food coverage from my

Medical nutrition coverage would make an enormous difference to our entire family. We spent years in school to provide a good living for our family, and yet every month we are faced with the enormous cost of medical foods not

When Joe was 3 weeks old, coverage of his PKU medical formula was denied by our employer provided insurance. We couldn’t believe it. He was being denied insurance coverage for the only treatment that would prevent intellectual disability and allow

Because of my early and consistent nutritional treatment, I developed normally and graduated high school and then college. I currently hold a master’s degree in Human Nutrition and work in Central Alabama as a registered dietitian at a group of

My daughter is a vibrant 1.5 year old. She currently requires about 9 cans of formula a month, which will only increase as she gets older. I have no idea how we’ll be able to afford her formula if we

Our oldest daughter Stephanie was born with PKU. The costs for her food and supplies is very costly! We as parents do what we can do for our children. My husband works long hours and has very few days off

When Emalynn was born and diagnosed with PKU, we had no idea what to expect or think. Luckily we were blessed with a bright happy 3 year old who does her best to understand this disorder, but her diagnosis has

We are a poor family. Aside from food stamps we don’t have anything else to help with regular food let alone medical food. over half of our money goes towards expensive foods in stores and trying to get as much

Asher is my happy, smart, funny, rambunctious four year old. He loves to play with tractors, his sister, swim, and eat! He loves fruits and veggies but relies on medical nutrition to provide him filling, rounded meals and snacks. It

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 within range 2-4 so it is just a waiting game now. I have to struggle

Earlier this year we experienced what not being able to afford formula & medications or have no insurance coverage is like for so many. Our son Maximus 9 y/o noticed a taste difference in his formula & refused to drink

My daughter Breeze, was born with a metabolic disease, called PKU. PKU is a rare genetic disease. She is 1 of 15,000 PKUers living in the United States. We have medical insurance. I have spent hours on the phone with insurance about PKU medical

Homocystinuria comes with the risk of heart attacks and strokes when not on diet. In college it was impossible to afford follow the diet while trying to afford rent, utilities, tuition, health insurance, other medication, car insurance and other bills.

New York Teen, 17

My greatest worries are what happens if my husband’s job comes to an end and we can’t afford the medical formula/foods or can’t afford insurance. More importantly, what happens when my son has to start taking care of these expenses himself.

Inborn Errors of Metabolism and Conditions on the RUSP

Emily, 11

Will, Age 12

Sasha, Age 11

Kelsey, Age 25

Adysen, Age 11

Elliot, Age 2

Mason, Age 2

Marisa, Age 10

Angelica

Emily, Age 18

Jalen, Age 5

Andrea

Owen

Joe

Millie

Harper, 18 months

Stephanie, 12

Emalynn

Terry, 4

Asher, 4

Renee

Maximus, 9

Breeze, 6

Danae

New York Teen, 17