Meet one of my incredible Chiaroscuro (chiaroscuro.amymurgatroyd.com) families! Not one but two of their children have faced harrowing genetic disorders requiring multiple hospitalizations and surgeries. The waves that tumble and pound us in life are shaping, and this dear family has been tenderly shaped by their story—and has bravely converted their pain into purpose.

In mom’s own words: “There is no effective treatment for Generalized Arterial Calcification of Infancy (GACI). As the patients reach the teenage and young adult years, they start to develop something called calcific enthesopathy, which is calcification of the ligaments and tendons, which causes significant pain, reduced mobility and range of motion. It is progressive and the only treatment available is pain medication. Some of the patients in our community who are in their 30s are crippled by pain every day of their lives. It is devastating to think that this is in our children’s future. There are new treatment options in research and clinical trial, but nothing for our kids yet, and nothing is approved.

But we are the lucky ones. Our children survived. They are alive today. They are learning and playing, exploring and growing every day. Too many families in our community have lost their children to this disease.”

In 2018, along with 3 other families, these parents co-founded GACI Global, the first patient advocacy group for patients and families affected by GACI or ARHR2 (rickets). You can learn more about the disease and their nonprofit at https://gaciglobal.org/.

It was a true privilege to honor their children’s strength and bravery with this film.