Patients & Providers for Medical Nutrition Equity

Aidan, 9 months

Trying to keep your child healthy and also full without medical food is nearly impossible. The number of times you have to say “no” to a PKU child and the constant worry about running out of foods they can eat, or whether you will be able to afford it

Having the medical nutrition covered by our insurance would grealty imporve the options and the cost of the food that Clayton would be able to eat since he is only allowed to have 5g protein a day. With him only

Will, Age 14

I am 14. I need my formula to live and grow. I am an athlete and a good student. My formula and low protein foods are critical for my brain and body.

If Brandon was able to get his medical food covered we would take advantage of ordering from Cambrooke foods company more often. His favorite food is pancakes and we would absolutely have his mix in hand! We would be able

Hattie (20 months) and Maxine (6 months)

We have two beautiful daughters, Hattie (20 months old) and Maxine (6 months old) who were diagnosed with PKU at birth. Because of their PKU both girls require medical formulas in order to grow and develop on par with their

Ellis, Age 12

We have spend hundreds of hours on the phone, writing letters and working with her doctors for our insurance to provide the medical nutrition needed for Ellis to stay at her healthiest.

My name is Sarah. Im 24 and I have classical PKU which means my enzyme in my liver has a hard time fuctioning breaking down phenylalanine. I’ve always had struggled with keeping my phe levels in range. Which when they

I will begin with saying there are others that are in far greater need of medical nutrition coverage than myself. I have been brought up in tremendously positive circumstances and have the ability to partially cover my medical necessities. Some

Coverage for medical nutrition for myself would mean freedom from worry and security that I will continue to be my best self. Without coverage for medical nutrition it is virtually impossible to be compliant with my diet. When I cannot

Julian, Age 13

My employer, though great for everything else, is self-Insured. Due to this fact they are not required to cover my 13 year old’s formula.

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 $250 a month for the formula he drinks to get nutrients he needs to grow

Medical Nutrition coverage will ensure my son gets the formula he needs to grow and develop normally. I have been fighting for accurate formula coverage his entire life. The insurance issues have not been resolved and he is almost 5.

While we are very fortunate to have insurance that can help us with the costs, there is still a great financial strain associated with the cost of providing nutrition for our son. Additionally, the stress and anxiety over his future

My son has classic PKU and his food options are very limited. We rely heavily on medical foods to fulfill his dietary needs. It is a struggle to have the insurance company provide coverage for the medical formula and foods.

We have three beautiful children, two of which have PKU. We spend over $120 a month on medical formula, foods, and medication for PKU. If medical nutrition were to be covered, we could breathe easier knowing our children would receive

Our son was diagnosed with FPIES at around 7 months of age. He is intolerant or allergic to upwards of 40 foods. Even at the current age of 3, he can only eat about 10 foods including the formula (medical

Hi, I’m Pat and this is my son, Isaac, and husband/caregiver, David. Isaac is high functioning Autistic. I’m Type 2 diabetic. My husband recently has been hospitalized for pulmonary edema. My family is in and out of hospitals a lot

We adopted our beautiful daughter Zoe three months ago from China. We did extensive research on PKU and prepared ourselves the best we could to meet her needs. We live in TN and I was happy to see that formula

Lincoln was diagnosed with a severe milk protein allergy at 2 weeks of age after blood was visibly seen in his stool. His pediatrician changed his formula from Similac to Alimentum RTF (I had a double mastectomy) and this continued

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 9 on Thursday and he has NO SAFE FOOD. He is 100% tube

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 had insurance companies outright deny me coverage for my formula so much that

Dylan, Age 5

Told we were “too rich” to qualify for medical foods coverage but if we liquidated all our assets we could qualify for limited help.

My son, Max was diagnosed with FPIES after I stopped breastfeeding and he started on milk-based formula and we started introducing solid foods. He had terrible gastrointestinal reactions which almost ended up in the ER on a couple different accounts.

My daughter has EoE allergies and IgE allergies and is already a tiny girl. At 17 yrs she only weighs 100lb. We are still trying to figure out all of her triggers, which is a long process. We have so

Remington, Age 18

pkunews

Remington was diagnosed with eosinophilic esophagitis as a toddler. By the time he was 3 years of age, it became clear that food was worsening his condition. By taking so many foods out of his diet, he was at risk

Aidan, 9 months

Clayton, Age 4

Will, Age 14

Brandon

Hattie (20 months) and Maxine (6 months)

Ellis, Age 12

Sarah

Allen

Nicole

Julian, Age 13

Walker, Age 5

Johnny, Age 4

Hudson

Deckard, Age 1

Grace, Age 11

Seton, Age 3

Pat and Issac

Zoe, Age 4

Lincoln, Age 2

Jamus, Age 9

Kayla

Dylan, Age 5

Max, Age 17 months

April, Age 17

Remington, Age 18