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My Daughter's Rare Disease Is a Superpower

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We’ve just returned from parents evening. Another stark reminder that our child is falling behind. That she is constantly having to play catch up both academically and socially, as well as learn to live with the ups and downs of her rare genetic condition.

She is so proud to be that 1 in 1 million. She never complains, she never asks why, she never doubts herself. She is the beacon of light at the end of the tunnel of misdiagnosis, medical appointments, cancelled appointments, miscommunications, medical reports, healthcare plans, Googling of this rare disease (just like the doctor does), hospital visits, hospital stays, learning to use new equipment — the list goes on.

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