The story of Linda
The doctor had, just a week before, conveyed the results from my infant daughters MRI profoundly wrong. He hadn’t understood the seriousness of the results and delivered to us a message about findings that were uncomplicated. About a week later I went to the radiology department to pick up the report from her MRI. The results we were given over the phone by the doctor just didn’t quite add up and I needed to read the results myself.
Alone in the hospital parking garage I read the report and found out that my daughter had an ultra-rare disease, progressive, lifelong and with few treatment options and no cure. She was the first diagnosed with this in our country.
Receiving her diagnosis alone like that has in a way been symbolic to our journey this far. Searching for answers and possible treatments for my daughter by myself. Becoming an expert on my daughters condition wasn’t something I necessarily wanted to be, it was something I had to become.
I created a group online for this ultra-rare disease that has now grown into a nonprofit organization. My hope is that parents receiving this diagnosis for their infant can easily find us and not feel so alone in the world. It’s what I’d wished existed when I sat there in the parking garage.