Why It’s So Important to Find Your People

When Alfie was first diagnosed, I went searching. I needed answers. I needed to know that my little boy would be OK. I searched every website and every social media platform. Some days I got so obsessed that I’d have to force myself to stop.

What I’ve Learned Since My Son’s LAMA2 MD Diagnosis

On Oct. 21, 2019, I sat in a doctor’s office with my 11-month-old son, Alfie, and was handed a piece of paper. Nothing was said, nothing was explained — I was just given the paper. This piece of paper included words such as “severe,” “deformities,” “insufficient,” “seizures,” “inability to…