With heavy hearts, we share the passing of our beloved Samantha, who left us far too soon at the age of 32.

Samantha courageously battled two rare genetic conditions; Ehlers-Danlos Syndrome (a connective tissue disorder diagnosed in 2019) and Best Disease (a retinal disorder diagnosed in childhood); plus many undiagnosed Traumatic Brain Injuries. These "invisible illnesses" played a causal role leading to Alcohol Use Disorder. 

The emerging science is now recognizing and gaining an understanding of Ehlers-Danlos Syndrome (EDS) and the disorders that accompany it including those Samantha was diagnosed with: Postural Orthostatic Intolerance and Mast Cell Activation Syndrome.

Medical science has only recently begun to recognize the connection between childhood brain injuries (aka concussions) and adult Alcohol Use Disorder. She worked hard for her sobriety, successfully at times. The medical care she received focused on Alcohol Use Disorder while not recognizing the underlying causes. 

Despite the hardships, Samantha's brave, determined spirit, fueled her dedication to overcoming her struggles. Unfortunately, her and our work to get her the help she needed was unsuccessful.

(See Karlie's Note under "About" for more information.)

The "What is Your Ripple Effect?" design on her grave marker (see top photos) came from the t-shirt she designed just six months before she died. Her ripple effect is felt forever by those of us who knew her. 

Samantha's kindness and compassion touched the lives of many, and she will be deeply missed. We hope others will be cared for in ways she couldn't access and will be inspired to help and support others to get the care they need. Even in her pain, she was generous. Even in her death, she is teaching us.

The breakthroughs we've made alongside Samantha’s health challenges have led us to discover a deeply compassionate understanding of the struggles with addiction others have gone through. We grieve, too, for those who have gone before whose lives we missed out on and lost as they struggled in shame. Whole vistas of forgiveness open up when family members know what caused their relative’s difficult behaviors.

Samantha is survived by her beautiful young daughter, Remy (6), who she so wanted to be here for, her partner Jason and his daughter Bree, her siblings Madalin, Jesse, and Will, her parents Karlie and Robert, her step-father, Mark, her grandmother, Victoria, her cousins, Alex, and Amanda, and her Aunt Maria.

We celebrate the life of Samantha Schaaf, a loving, dedicated mother, and a remarkable woman. 

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