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Family feelings child parents

How We've Found Support for Our Child's Ultra-Rare Disorder

Family feelings child parents
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themighty.com
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While the world has turned upside down in almost every way over the past four months, there is one thing that has been comfortingly constant: our online parents group.

With fewer than 100 diagnosed cases of my daughter’s ultra-rare condition – a mutation on the HNRNPH2 gene – throughout the world, there was never a very good chance of finding a local support network or someone with the same diagnosis living just down the road from us.

We have never randomly met someone who knew another person with our condition, including those who work in the medical profession or specifically with children who have disabilities.

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