A family of four experiencing a journey of rare disease, a medically complex child, hospital living, child loss, and life after loss.
Our son, Quinlan, was diagnosed with an ultra-rare disease at 14-months old. This disease, known as a BRAT1-related disorder, was unknowingly passed down from my husband and I. He spent over 300 days in the hospital, many of those days in the ICU. Two years after his death, IVF brought us his little brother, August, and together we are keeping his name and memory alive.
Our goal is to give families hope and awareness for the future by sharing our journey and fundraising in Quinlan's name for other families like ours. We have learned that a small act of kindness and support can make a big impact on others going through one of the toughest times in their lives.
Listen to Rarely Normal podcast, co-hosted by me and Katelyn Nugent to hear more incredible stories of rare disease and inspirational journeys of hope and perseverance.