Ohio

Ronan, Age 2

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

Colton is almost 7 years old. He was born at 30 weeks and lost 2/3 of his small bowel due to a mid-gut volvulus. He has been on an elemental formula for malabsorption nearly 7 years because of having Short

Coverage for medical nutrition is dictating our decisions on treatment. We cannot afford to pay for the formula so are delaying treatment because of the fact that it is not covered. I fully believe that insurance not paying for something

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

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 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

Our state has a state funded program for the formula. The Kuvan my daughter takes we are getting assistance through NORD (charity organization) based on our family size and joint income. Any medical food that we order are out of

We are fortunate that in the State of Ohio our daughter’s medical formula is covered. Because she is a responder to Kuvan, we have been able to rely less on specialty low-phenylalanine foods but do still purchase low protein pasta.

We would be absolutely grateful if our daughter Zoey’s Medicaid insurance would cover her medical food, not just her formula. I believe children with PKU should be able to have both formula and food to be able to be successful

Insurance covers my daughters medical formula but doesn’t cover her medical foods. If my daughters medical foods were covered it would help us out tremendously! Insurance believes it is not a necessity to cover medical food. Medical food is a

Ronan, Age 2

Colton, Age 6

Cody, Age 6

Clayton, Age 4

Dylan, Age 5

Emily, Age 18

Jalen, Age 5

Lisa

Christiana, Age 11

Zoey, Age 1

Nia, Age 3