“With HIE, things go well…until they don’t.” As much as I wish I’d never heard of HIE, I’m forever grateful to have stumbled upon Hope for HIE’s parent support Facebook group one late and lonely night in 2013.
🫶 In the aftermath of Katie and Caroline’s birth I turned to Hope for HIE for peer support and information.
🫶 As the girls have grown, Hope for HIE has grown as well, expanding advocacy and outreach programs and partnering with researchers while still prioritizing family support and services.
🫶 In recent years I’ve had the honor of sharing my HIE story with new HIE parents to assure them that they are seen and they aren’t alone, like so many seasoned HIE moms did for me along the way.
🫶 These days I look to them for timely, accurate, and reliable messaging on the implications of current events for the HIE community.
HIE occurs in roughly 1-3 per 1000 live births in countries like the United States, and upwards of 20-30 per 1000 live births in lower resourced settings.
If you know or meet someone who finds themselves thrust into this world, please share this invaluable resource with them.
- Margie Jones
You can learn more about Margie's story below:
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