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Join date: Mar 18, 2019
Posts (4)
Mar 31, 2026 ∙ 3 min
Incredibly Smart and Resilient
Hi there, Hayley, Hannah’s mom here. Nearly three years ago, receiving Hannah’s diagnosis felt overwhelming and scary. But now? Life is oh so sweet—with a side of sassy. It’s a part of our family’s story, but it doesn’t define Hannah or us. We’re great. We’ve built a strong medical team around her—one we truly trust and believe in. The best advice we received was not to wrap her in bubble wrap, but to let her live her life. And she does—fearlessly. She’ll let us know when she needs help, and...
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Mar 13, 2026 ∙ 2 min
Meet Alicia's Daugther
Our daughter was diagnosed with PHACE (P, H, A) at one month old in March, 2020. When she was born she had slight bruising on her face - our pediatrician said that could happen but everything looked good and there was no worry. Over the next few weeks the bruise grew into redness on the left side of her face and her left eye began to swell. We thought maybe she had a port wine birthmark, but our pediatrician didn’t think that’s what she had. After her three week appointment, she could no...
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Jul 16, 2024 ∙ 2 min
Meet Claire
Story by Claire's mom, Amy Hello everyone! I’m Claire’s mom, Amy. I had a regular pregnancy, Claire was a full term baby. When she was...
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