Life is tough, but so are you.
Bringing awareness to rare disease, specifically BRAT1-related disorders, & learning to live each day after child loss.
Who We Are
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.