Our Diagnosis – Into The Unknown – Porphyria 101

Our Porphyria Diagnosis

Porphyria has come to mean a lot of things. I hold a piece of paper that tells me it is the reason my 7-year old son died. DNA testing tells me everyone in my family has it. When I speak with doctors, there is either confusion or questions. Most tell me they can’t believe our story because, “people don’t die … Read More

The Diagnosis, Expectations, and Disney World

So you’re probably wondering what these three things could possibly have in common. I’m beginning to think it marks the end of my confidence as a mother. It sounds so dramatic, but in the moment it is how I’ve felt. A couple of weeks ago, we got the call. It was the dreaded call from the doctor’s office that we … Read More

Our Story Of Loss (Continued) – Guest Post From My Husband

I’m featuring a guest post from my husband, David. As we continue to tell our story of loss, it only makes sense that the next part be told by him. Every parent knows the feeling of guilt. That feeling gets magnified when your child is hurt or dies. This is a glimpse into some of what we’ve been dealing with lately. … Read More