Erika Campos, United States (US), Wisconsin
Martin was born with faint, pink marks that we were told were due to birth and would fade. They didn’t fade; they got brighter and darker and became raised, it covered his back, half of his chest, full arm and side of his head. He was misdiagnosed and when his skin started to open with sores we took him to the ER where many tests were done and in a couple of days was diagnosed with PHACE Syndrome. He was two months old, we were terrified, something we were told would not be any harm was actually internally affecting him and was potentially life threatening as they were unsure he was getting enough blood supply with the narrowing of his arteries. He started taking propranolol to fade the hemangioma and we became experts at bandaging our months old baby so his sores would close and not become infected. His few physical delays didn’t stop him as he is now a four-nado who loves to run, play and sing. He is no longer on propranolol but is on a daily aspirin as a blood thinner for his narrowed arteries and he is still at risk of stroke. He will continue to have many annual tests done and our journey continues as he starts school this year. We are truly blessed to have him and we adore his beautiful PHACE and soul.