Hello, and thank you for being here. My name is Shelbie, and I’m writing this with love and humility to share the story of my incredible husband, Justyn, and why we need your help today.
Justyn lives with Ehlers-Danlos Syndrome (EDS)—a rare and complex genetic disorder that affects his connective tissue, causing extreme joint instability, constant dislocations, chronic pain, and complications with his skin, nerves, and organs. Each day brings new challenges. Some days, he can walk short distances. Other days, even sitting up is painful. EDS has changed everything about how we live, but through it all, Justyn continues to face life with a strength and grace that inspire me every single day.
He is the most loving, kind, and resilient person I know.
Living with EDS requires countless medical appointments, ongoing care, and specialized equipment that insurance often doesn’t fully cover. Right now, one of our most urgent needs is something we can’t do without any longer: a new wheelchair and a wheelchair-accessible conversion vehicle.
Currently, we’re using a standard car, and I take apart and lift Justyn’s electric wheelchair in and out of the trunk every time we leave the house. I also live with a chronic illness called Crohn’s disease. I have an ileostomy bag that I will live with for the rest of my life. My illness brings its own complications, but how it affects my ability to care for Justyn is. I am not supposed to lift things over 5 pounds. The wheelchair he needs is over 400 pounds and does not allow for taking it apart. I have injured my ileostomy site multiple times lifting his chair in and out of the trunk of our vehicle. Thus it has become physically overwhelming and unsafe for both of us. Without a vehicle that can safely and easily transport Justyn and his wheelchair, we are increasingly isolated—and it’s getting harder just to make it to doctors’ appointments, let alone live a fuller life.
A wheelchair-accessible van would be life-changing. It would allow us to safely travel, access critical care, and experience the world beyond our four walls without fear of injury. Most of all, it would give Justyn some independence and dignity back—something every person deserves.
This is not easy to ask. We are used to showing up for others, but right now, we need our community to show up for us. Help Hope Live allows people like us—those fighting difficult health battles—to seek support from people who believe in compassion, healing, and hope.
Every donation, no matter the size, brings us closer to a safer, more mobile, more hopeful life. If you’re unable to give, please consider sharing our story with others. Your kindness, encouragement, and presence here mean more than we can say.
Thank you for being part of our journey. Thank you for being part of our hope.
With love and deep gratitude, Shelbie & Justyn
