Our sweet Noah was born in January 2026, and from the very beginning, we knew there was something uniquely special about him. What began with beautiful markings across his skin and a little asymmetry in his legs eventually led us through months of specialists, imaging, genetic testing, and more medical appointments than we ever imagined having with our baby. We eventually learned that Noah has an extremely rare genetic condition called MCAP (Megalencephaly-Capillary Malformation Syndrome), caused by a mosaic mutation in the PIK3CA gene. MCAP can affect growth, blood vessels, the brain, and development differently in every child. Through all of it, Noah has been the happiest, sweetest little guy. He is thriving, meeting his milestones, laughing with his big sister Kya, and reminding us constantly that he is so much more than a diagnosis. One of the ways MCAP has affected Noah is the growth of his brain and the circulation of the fluid surrounding it. After months of monitoring, multiple opinions, and some incredibly difficult decisions, his medical team has recommended brain surgery to place a VP shunt to treat his hydrocephalus. On October 5th, our eight-month-old baby boy will undergo brain surgery. As parents, there really aren’t words for what it feels like to hand your baby over for surgery. We are incredibly grateful for the people who have surrounded our family with love, prayers, meals, messages, and offers to help. We created this page because so many people have asked what they can do. There is absolutely no expectation to give anything. A prayer, a message, a meal, helping make life a little easier during Noah’s recovery, or simply loving our boy alongside us means more than we could ever explain. Thank you for being part of Noah’s village. 🤍
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