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Navigating This Pandemic ‘New Normal’ When Your Child Has a Rare Disease

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themighty.com

The other night I participated in a (virtual) meeting where I realized that my daughter is considered a “low-incidence student.” It is funny because I so easily forget that my experiences navigating life while raising my daughter with the rare disease DDX3X syndrome aren’t so typical.

When my husband and I were preparing for a move closer to his work about four years ago, our specific choice of location was totally based on the needs of our daughter.

She had no diagnosis at the time, but many challenges that required therapy and medical visits. I researched therapy clinics, schools, and physicians in the area.

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