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Meet Tanya MacNeil, one of our HIE Awareness Ambassadors from Eastern Passage, Canada!
What is your story and connection with HIE?
Beatrix suffered HIE at birth, she ended up in the NICU for a month. She was the sickest kiddo there, and we were repeatedly told there was no hope. When we refused to withdraw care, they offered the option of surrendering her foster care if we couldn’t be the ones to make that option. We decided to fight for her, and she is amazing! She will be 7 on April 2, and while she is very physically affected she is cognitively her age. It’s been a ride advocating for her, to make sure she is treated with the dignity and respect she deserves as a human being.
How did you first hear about the diagnosis of HIE?
We learned it on the second day of her life. The doctor was shocked no one told us what was happening yet.
How did you first hear about Hope for HIE?
I Googled HIE after that conversation. I found Hope For HIE that day, but couldn’t get myself to join for 5 more months.
What do you want the world to know most about your story and HIE?
HIE is only a small part of our family’s story. Beatrix is so much more than any of her diagnoses. She’s a wonderful person, loves her pets, likes sparkles, and has a killer fashion sense. I wish we were given hope during the time at the hospital, but I decided to listen to our gut. We trusted we knew our daughter best, and pressed forward with her care. Beatrix is amazing, and she is worth fighting for.
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