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

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,

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...

By Whitney Pacheco, PHACE Syndrome Community Board of Director The PSC’s National Conference last June was where I shared my family’s...