Tag: rareparenting

SOLE SURVIVOR

LDA Research is supporting CureLONP1.com Aria’s Miracle research fund and her parent’s conviction that hope lies within the global medical and scientific community Aria’s parents need to

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When a Baby is Born with Disabilities, and Ignored

As many as 200 million children globally have a rare disease, yet most aren’t diagnosed for years after birth. Instead, parents face an array of difficult symptoms often dismissed by doctors as “typical” developmental delays. In honor of FOXG1 Syndrome, Awareness Month this November, we’ll look at this disease as an example. I’m the mother to a little boy with FOXG1 Syndrome, and I, too, was once dismissed by doctors—to the point where I felt powerless and alone, with nowhere to turn to help my sick baby.

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