I'm a mother with a busy family and a struggling little boy, and together we are trying to navigate the world of Rare Disease. It's painful and tender, fascinating and devastating, and a lot of days it just plain sucks. With 4 vibrant, happy children and a husband who will stand by me through the fiercest of winds, I am happy. This is our story, and we are still writing as we go.

I promised some new info. I have some.Sort of. I’ll go back to the spinal tap.  What the neuro was looking for was low dopamine levels. If his spinal fluid […]

I’ve been discouraged by the lack of progress in this diagnosis process, and there hasn’t been much to write about until now. Yes… since AUGUST… not much has happened as […]

We waited months for Trevor’s EMG. It took weeks just to get a call about an appointment. Finally, we were called and told that Trevor had an appointment for March […]

Dr. Butterfield suggested that Trevor begin physical therapy while we searched for a diagnosis.       At first, Trevor started at a local therapy center, but we soon realized that Trevor […]

Remember my fears of Duchenne Muscular Dystrophy? For a terrible, terrible three weeks, we were haunted by fears that we would be told this was what Trevor was facing. I […]

While waiting for the EMG, we got to work on whatever we could. We began with a second opinion. After I’d gotten home and explained to Jason just how long […]

While in my classroom at the high school, I saw a call come in on my phone from the Neuro dept. at PCMC. I stepped out and took the call. […]

It seemed like we waited an eternity.  Really, we only waited a month.  In the meantime, I’d been searching, searching, searching.  What could we find on an MRI?  What central […]

Driving to Primary Children’s with Trevor in the backseat, I didn’t say much. I just held Jason’s hand. And Cried. I tried not to, but… I was scared. Checking in […]

When I got home from the ortho visit, I began to worry.  What did he mean by ‘neurological’ being scary?  It couldn’t be…. a tumor…. could it? I hopped on […]