OLD STORY

My son, Nash, was born in October 2023 and diagnosed with a severe case of PA at that time. He received a liver transplant at 5mo and, despite a variety of challenges and complications of both transplant and PA, is now thriving. He’s talking, walking, and the happiest little dude you’ll ever meet. You’d never know, based on his attitude, how hard we’ve had to fight for our happy. Each month we find more elements of “normal” and we’re so grateful for the support of the entire PA community (medical experts and families alike) in our journey so far.

NEW STORY

Nash was diagnosed with PA, at Children’s National hospital, shortly after he was born and after an intense and extreme early onset. We knew from his first weeks that a liver transplant was the best option to give him the fullest life possible, and we got him listed on the national registry before he was 3 months old. While we waited for a liver, several close relatives pursued living donor evaluation and, ultimately, Nash’s dad, Nick, was a match. Nash received a portion of Nick’s liver at 5.5 months old through the MedStar Georgetown pediatric liver transplant program. The transplant was successful and now, at 2.5 years post-transplant, Nash is thriving. He is a vibrant, extraordinary little man with a jocular sense of humor and an infectious smile.

While managing PA and a liver transplant are never without sacrifice and risk, we are so grateful for the care and support Nash has received and have no doubt of the big, beautiful life he will lead. He is obsessed with dinosaurs, his big brother, Remy, and playing outside. He shows us daily what it is to find joy in the simplest of things and embodies resilience in the face of hardship. He is the greatest illustration of what it is to live life to the fullest and we cherish him, and his example, every day.