Teagan: Junctional
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On April 14, 2026 our daughter Teagan was born. She was born with blisters on her calves and no skin on her fingers. We knew something was wrong instantly. She spent a week in the NICU and the doctors suspected that she had a rare genetic skin condition called Epidermolysis Bullosa. Filled with worry we had no idea what this meant for us. Shortly after she was discharged, Teagan's genetic testing came back and was diagnosed with Junctional Epidermolysis Bullosa (JEB) caused by mutations in the LAMB3 gene. Like many families, our world changed overnight. We went from welcoming our beautiful baby girl to learning about a rare genetic condition that most people have never heard of, including us. While the diagnosis brought fear and uncertainty, it also introduced us to an incredible community of families, healthcare providers, and advocates who have helped us navigate this journey.
Every day with Teagan is filled with both challenges and victories. Wound care, protecting her fragile skin, and closely monitoring her nutrition and airway have become a part of our daily routine. Things that many families take for granted require extra planning and caution. At the same time, Teagan is so much more than her diagnosis. She has the sweetest smile, loves watching her big brother, Cal, and enjoys being part of everything our family does. We celebrate every milestone, no matter how big or small, because we know how hard she works to reach them. Including celebrating with a candle and cupcake the 14th of every month. She reminds us daily that strength isn't measured by size - it's measured by resilience. While Teagan is still young, we are committed to staying informed about research, new treatments, and future clinical trials that may improve the lives of people living with EB. We are incredibly grateful for the researchers, physicians, and organizations dedicating their time to finding better treatments and, ultimately, a cure. We wish more people understood that EB is far more than "fragile skin." It affects every aspect of life - for the individual living with it and for their family. The pain is often invisible, and even everyday activities can cause injuries that most people never have to think about. In Teagan's case, just simply picking her up and holding her or tummy time. We wish more people knew that children with EB are not defined by their condition. They may be referred to as "butterfly children" but they are so much more than that. They want to play, laugh, learn, and experience life just like any other child. A little understanding, kindness, and inclusion can make an enormous difference. To every family walking in this journey: you are not alone. Some days feel so overwhelming, but there is so much hope in the EB community that surrounds us. Lean on one another, celebrate every victory, and never underestimate. Together we can raise awareness, support research, and move closer to a future where no family has to hear the words, "Your child has EB." To everyone that has supported Teagan - thank you. Your prayers, encouragement, generosity, and willingness to learn about EB have carried us through some of hardest days. We will continue sharing Teagan's story because every conversation creates awareness, and awareness brings us one step closer to better treatments, and one day, a cure. - Madison, Teagan's Mom |
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