Oregon

Liza

Because our employer plan is self-funded, and we have no other plan options through the company, I have no coverage for even formula needed to maintain a healthy and functional life. Our family is in debt because of the out

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

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

I was diagnosed with Homocystineuria at age 3, (1974) when I rubbed Trisodium Phosphate (paint Thinner) into my eyes. They originally thought it was Marphan’s Syndrome but upon looking at my eyes closer they found out it was Homocystineuria. I

Our family is very grateful that Laila’s PKU was discovered with newborn screening. Once we were able to overcome the fear and shock of her diagnosis, the next step was to learn about what we could do to keep her

Oregon

Liza

Kayla

April, Age 17

Joanna

Laila, Age 12