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 until then, we’re here, cheering her on every step of the way.

This beautiful 4-week-old baby girl had already been through so much. She was born with two large hemangiomas: one on her face and one on her back. She had already had a referral to the leading children’s hospital in our state and seen a dermatologist at seven days old. We had been told that this “extremely rare thing” we were doing the MRI for was not even really a possibility, but we needed to rule it out. To be candid, we were probably naive or in the baby bliss phase to think this was not a real possibility. Because of this though, we did not ask any questions leading up to the MRI. We had no idea what next steps even looked like if this was to be her diagnosis. We had been on this roller coaster since her birth, and we just wanted off; we wanted to rule out the diagnosis PHACE syndrome and move on.

On Monday, May 8, 2023, Hannah was formally diagnosed with PHACE. By Friday, May 12, 2023, we were having our first inpatient stay and starting treatment for her hemangiomas.

This journey has opened our eyes to the complexities of the healthcare system. My heart has broken countless times hearing about others' experiences—the lack of resources, limited access to care, and the struggle to be heard as parents. It’s overwhelming to realize how different our experience has been. We’ve been incredibly fortunate to have the best support and care from our healthcare team. This has given me a deeper awareness of what so many others have gone through and continue to face.

The PHACE Syndrome Community has been my anchor, saving me from spiraling in those early days when fellow parents validated my worries, fears, and concerns. I’ve told countless people that this community gave me true optimism during my darkest moments. The support from strangers who became friends—and then the opportunity to pay it forward by supporting new parents facing a diagnosis—has been absolutely invaluable. Just thinking about the unwavering support, the nonjudgmental advice, and the comfort of being part of a community that truly understands our rare diagnosis brings tears to my eyes. I never expected to learn from so many people around the world, yet this journey has connected me in ways I never imagined.

Even at just three years old, Hannah is incredibly smart and resilient. I see such a bright future for her. What could have been seen as weaknesses, we have turned into strengths. I continue to advocate for research that highlights how, despite reduced blood flow on the right side of her brain, her left side is compensating in remarkable ways—something we see clearly in her abilities and strengths. I want the research to reflect that this isn’t a limitation but a testament to her adaptability and potential. Too often, studies focus on deficits; I want to shift the perspective to recognize and celebrate the incredible strengths and advancements she demonstrates every day.