Colorado

Grayson, Age 2

Grayson needs to take an injection of a specialty compounded form of B12 called Hydroxocobalamin. Our insurance through my husbands employment and Medicaid do not cover compounded medication. Without this medication he would suffer from seizures, brain atrophy, vision loss,

Medical nutrition coverage would mean FREEDOM. Freedom from worry and the freedom to be able to make normal life choices such as what career to pursue and where to live without the fear of suddenly losing access to medical formula

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.

What would having had coverage for medical nutrition meant to me/my family? It feels like an insurmountable task to even try to answer this question. Looking back, it would have meant what felt like everything. It would have meant not

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 two weeks later that he tested positive for PKU, we were

I have three children, my six-year-old twin daughters Lucy and Lily and my three-year-old son Lucas. Lucy and Lucas were diagnosed at birth with PKU, a rare, inherited metabolic disorder for which there is currently no cure. Their livers are

My daughter Breeze, was born with a metabolic disease, called PKU. PKU is a rare genetic disease. She is 1 of 15,000 PKUers living in the United States. We have medical insurance. I have spent hours on the phone with insurance about PKU medical

When Emma was first born my husband worked at Avaya and we had Aetna. They refused to cover her medical formula despite appeals with letters of necessity from her Doctors. My husband changed jobs and second company insurance also refused

Colorado

Grayson, Age 2

Elyse

Max, Age 17 months

Maren, Age 6

Garrett, Age 9

Lucy and Lucas, Ages 6 and 3

Breeze, 6

Emma, Age 10