Tommy, Age 19
Chronic Intestinal Pseudo-obstruction · VirginiaMy son is 100% IV nutrition/hydration dependent. Without insurance covering his very expensive weekly deliveries of life sustaining ...
Evan, Age 8
EOSINOPHILIC DISORDERS · IllinoisAnnual cost: $7200
Our 8 yr old has been on EleCare/hypoallergenic formula since he was 9 months old. His first 3 years of life, he went from no safe ...
Maren, Age 6
Colorado · Propionic acidemiaWhat would having had coverage for medical nutrition meant to me/my family? It feels like an insurmountable task to even try to answer ...
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.
Mark, Age 61
PennsylvaniaAnnual cost: $7500
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 ...
Maeve, Age 8
Phenylketonuria (PKU) · TexasAnnual cost: $3600
As all parents who experience it, we were overwhelmed once we got the call, at 5 days of age, that our daughter Maeve had been ...
I’m almost 55 with PKU need I say more… okay was a sample for Kuvan and Lanephex. Amount others like 1st Pku camps!
Kathy, Age 55
Florida · Phenylketonuria (PKU)I’m almost 55 with PKU need I say more… okay was a sample for Kuvan and Lanephex. Amount others like 1st Pku ...
Sawyer, Age 2
EOSINOPHILIC DISORDERS · MissouriAnnual cost: $540
We spent a long time working with my son’s doctors to make insurance understand how much he needed hypoallergenic formula. He was ...
Kayla
Oregon · Phenylketonuria (PKU)When I moved to the West Coast by myself in 2014, I had to learn everything on my own like finding a clinic and handling coverage. I ...
Emily, 11
New York · Phenylketonuria (PKU)Annual cost: $3600
My insurance as a NYC public school teacher covers Emily’s medical formula only. But it is never easy. Every year there is a ...
Liam, Age 5
EOSINOPHILIC DISORDERS · NevadaLiam has struggled with GI issues, food avoidance, and maintaining growth since he was born, but the issues intensified once we tried ...
Amber
Indiana · Phenylketonuria (PKU)Annual cost: $4980
I was born in 1990 with PKU. My parents were told to expect severe disabilities. We need these medical foods for our everyday lives. ...
Reynaldo
Florida · FPIESAnnual cost: $3864
My son’s food allergies were so severe, he was reacting to the food I was eating through breastfeeding. He had blood in his ...
It would be such a relief for me to know that my daughter would always be able to afford her formula and medical food.
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 ...
Jacob, Age 6
Ornithine transcarbamylasedeficiency · VirginiaAnnual cost: $3600
Six years ago my son, Jacob, was born with a rare metabolic condition that requires detailed, daily medical care, including the use of ...
Garrett, Age 9
Colorado · Phenylketonuria (PKU)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 ...
Armando, Age 2
EOSINOPHILIC DISORDERS · FloridaAnnual cost: $18000
My son, Armando, struggled to grow and gain weight since birth. He would vomit daily and choke on foods once they were introduced. His ...
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 ...
Aiden and Aaron, Ages 5 and 3
Phenylketonuria (PKU) · WashingtonAnnual cost: $2400
I have two boys with Phenylketonuria, ages 5 and 3. We moved recently from California to Washington state. In California we had state ...
Declan, Age 11
Delaware · Phenylketonuria (PKU)Annual cost: $24000
When I was eligible for the Affordable Care Act, I “made too much money” since child support is added in for income for DE ...
Bethany, Age 19
Michigan · Phenylketonuria (PKU)Annual cost: $1200
Our BCBS does cover the Medical Formula for my daughter and does reimburse for low protein modified foods but this is never without a ...
Ben, Age 5
EOSINOPHILIC DISORDERS · IndianaAnnual 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 ...
Remington, Age 18
EOSINOPHILIC DISORDERS · FloridaAnnual cost: $25200
Remington was diagnosed with eosinophilic esophagitis as a toddler. By the time he was 3 years of age, it became clear that food was ...
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 ...
Jackson, Sawyer, and Holland
Phenylketonuria (PKU) · UtahAnnual cost: $30000
Because of the cost of medical nutrition, we sacrifice many other things. We are blessed to have always been able to afford medical ...
Marcella, Age 15
EOSINOPHILIC DISORDERS · OklahomaAnnual cost: $4320
Marcella was diagnosed with multiple food allergies in 2016. She is allergic to soy, peanuts, tree nuts,fish, shellfish, along with a ...