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 longer open her eye so we took her back to be looked at. We were sent to pediatric ophthalmology and told she had a “tumor around her eye” and “needed to be seen immediately”. The following Monday we were sent to the local children’s hospital and admitted for testing and observation. After a week in the hospital, we had answers and began our PHACE journey.

PHACE was overwhelming and scary at first. We were seeing so many specialists - ophthalmology, dermatology, audiology, vascular anomalies, neurology, etc. plus making sure she was eating enough to take her medicine twice a day – it was hard to keep everything (and everyone) straight. We didn’t know what out daughters life would look like with PHACE, but five years later our girl is thriving. We still get worried when she’s sick, and I do wish I could wrap her in bubble wrap, but other than what’s left of her hemangioma you would have no idea she’s a rare girl.

I don’t think I can adequately put into words how grateful I am for the PHACE Syndrome Community. I remember exactly how it felt sitting in the hospital, crying because I didn’t know what this diagnosis would mean for my new baby. I found the PHACE group on Facebook and after posting questions I immediately felt some relief. Everyone was so kind and welcoming - they helped me navigate questions I should ask and how to properly advocate for my daughter. They shared their stories and offered support when I was struggling. I’m forever glad I found this group when I did, it was exactly what we needed in a scary time.

Our girl is 6 now and she is doing so great! She’s currently in school making friends, and learning new things every day. She’s hilarious, smart, kind, sassy, and the bravest girl I know. She’s handled everything that’s been thrown her way better than I could’ve ever imagined. We’re so proud of her and we can’t wait to see what the future holds for her.