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Tag: awareness

Meet Abigail

(Written by Michelle Alexander) 13 years ago, I laid bleeding to death. I had just seen my only baby girl for the first time without the fuzziness of an ultrasound. She was beautiful. For 7 hours, I laid in recovery while my body threaten to give up. Thinking of the only real picture I had …

Meet Mary and Robert

(Submitted by Pat Wright) HPE is not a rare disorder in our immediate family, 50% of the children have HPE, and it has not prematurely taken the lives of the affected children, as one is 32-years old and the other is 23-years old. It has however taken us down a road of understanding and certainly …

March 10-16 is Holoprosencephaly Awareness Week!

March 10-16 has been designated as Holoprosencephaly Awareness Week! Over the course of the next several days, we would ask that you look for opportunities to share the HoPE you’ve found in Holoprosencephaly.  Use your favorite social media accounts to reach others, and encourage those others to share the HoPE with their social media contacts.  …

Please do not stare . . .

We have all been there . . . in a public place with our child . . . and we feel the stares.  What do you do? Kellie Moore, mom to 4 year-old JT, from Bowling Green, Kentucky recently created this t-shirt for those “special” occasions. That’s one courageous and creative mom you have, JT!   …