September 2018 Archives

Tyson, Age 7

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

Month: September 2018

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