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The 'Impossible Lesson' Many Rare Disease Patients Learned Before COVID-19

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themighty.com

Last November, for the first time in six years, I boarded a plane to fly to Disney World with my family. I had not flown, stayed in a hotel, or been among the living in years.

Of course, I was prepared — seat covers on the plane, masks for me and my son (before they were the norm), lots and lots of medication, and boxes shipped ahead with supplies for us upon arrival.

I brought everything — our own sheets, towels, all of the food my son and I would eat, and I even rented an electric scooter to ensure I could physically participate even with heat and long days of walking.

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