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What I've Learned About Bravery as the Parent of a Child With a Degenerative Disease

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themighty.com

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.

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