When my daughter was diagnosed with a rare, neurodegenerative disease in 2015, the old me died. I lost myself in the endless persist to save her.
I began to dive into the leukodystrophy community to find anything and everything I could to help her. I spent most of my time researching and making phone calls to get Jordyn enrolled in a research study I had heard about at Children’s Hospital of Philadelphia.
They had a new Leukodystrophy Center of Excellence that had just opened. We would end up traveling to Philly every year, sometimes multiple times a year for research visits and other procedures.Read more on themighty.com