June 2021 Archives

Elizabeth

I’m Elizabeth and I have Classic PKU. When I was five my drs and parents a took me off the diet and formula. I was fine till age 30. That’s when i started suffering from pku side effects and severe

Complete cost coverage would be wonderful, but more importantly for us, awareness of the medical need for this coverage and how it affects my daughter’s growth and development is critical. For 12 years, we have cycled through and fought with

VelaFilemon

pkunews

RossDeborah

pkunews

Kathleen

I am disabled so we are a one-income family (I am unable to work outside the home). I have several diseases and syndromes that cause multiple issues: I am unable to digest gluten, I need a special diet for my

I just want Lily Jo to be able go to school and eat lunch like the rest of the children. I want to know that once again someone doesn’t understand or miss read the list of instructions for the food

This is Eliot and he has PKU. With formula, low-protein foods and an incredible amount of discipline on his part, Eliot is a happy, healthy, thriving 11-year-old. He is a talented swimmer too, having achieved a Junior Olympics time standard

My 2 year old son Ronan has FPIES. He was born healthy but quickly lost to much weight within 2 days after being born and was failure to thrive for the first month of his life. Once I realized at

Teresa

My name is Teresa Boyette I live in Kinston NC I was born overseas where nb knew bout pku tills American soldier discovered it.i struggle everyday with high levels n can never get to normal level like docs want even

At first my dad’s Connecticut Carpenters insurance refused to cover my condition so he took a job with the Milford Board of Education and I have had excellent coverage ever since. I can only imagine how different life would have

Over the course of five years, our out-of-pocket expenses for medical nutrition for two children was approximately $85,000. Add to it the higher cost of specialty food that they had to eat because it was medically necessary due to ingredient

Being able to access medical formula is absolutely necessary for my family. My 10 year old son gets 1/3 of his nutrition from Neocate Splash at the moment. We originally tried the top six elimination diet but unfortunately my son’s

We spent a long time working with my son’s doctors to make insurance understand how much he needed hypoallergenic formula. He was officially diagnosed failure to thrive at 2 months. He was diagnosed with significant GERD at 4 months. He

Katherine was only 2 months old when we knew something wasn’t right. It took us 8 more months to figure out what was going on. No baby formulas would work for her. Not regular formula, not soy formula, not even

Kendall

My name is Kendall Temple Jr. and was born in 1966. I was one of every first people diagnosed with PKU in the state of Maryland. There was very little know about how to treat PKU back then and only

Having coverage for medical nutrition would mean I would have access to life-saving foods and formulas without ever having a lapse in coverage. I wouldn’t have to worry about my insurance deciding what’s best for my treatment. It means I

Yazmin was four days old when she was diagnosed with mild PKU. She’s been allowed most things except for meat, she still requires formula daily. We work effortlessly daily to try and provide meatless options for our girl which has

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Month: June 2021

Elizabeth

AuchinclossJake

CraigAngie

KilmerDerek

Audrey, Age 12

VelaFilemon

RossDeborah

Kathleen

Lily Jo, Age 6

Eliot, Age 11

Ronan, Age 2

Teresa

Sarah

Isaac (13) and Caleb (11)

Rylan, Age 10

Sawyer, Age 2

Katherine, Age 8

Kendall

Kurt

Yazmin, Age 2

FitzpatrickBrian

LevinMike

LeeBarbara

GillibrandKirsten

ShaheenJeanne