Help Ensure Comfort & Care for Kali’s Battle with EDS

Hi, my name is Spencer Hauck, and I’m Kali Hauck's brother. For most of my life, I've watched my sister fight through chronic illness. From countless hospital visits to ongoing doctor appointments, she has been seeking answers and, more recently, seeking comfort. Kali is now bedridden 24/7 and rarely leaves her room unless she has to go to the emergency room.

Kali was diagnosed with Ehlers-Danlos Syndrome (EDS), a progressive condition that causes her body to deteriorate slowly, eventually leading to complete system failure. Her doctors say that her symptoms most closely resemble an advanced ALS patient. Along with EDS, she also has Mast Cell Activation Syndrome, which causes severe allergic reactions to many substances, and Postural Orthostatic Tachycardia Syndrome (POTS), which affects her autonomic nervous system. Because of these conditions, Kali cannot eat or drink due to organ failure, and she depends on IVs for daily nutrition and hydration. She is also on a ventilator due to lung failure in both of her lungs. Every day, Kali endures excruciating pain as most of her body systems are not functioning as they should.

Over the past few years, getting the medications and medical supplies she needs has become increasingly difficult. Medicaid has been covering fewer and fewer of her essential supplies, putting an immense financial burden on my family. Year after year, we have been forced to pay out of pocket for many of Kali’s medications and necessary equipment.

Kali is scheduled for gallbladder surgery and tracheostomy surgery in July. While Medicaid provides her with a caregiver team that comes daily to assist her with basic needs—medication management, cleaning, and providing her with companionship—her caregivers will stop working during her hospitalization because medicare will not pay caregivers during hospital admission. Without financial support, we risk losing the people who have become like family to her over the years. We hope to be able to continue paying for their services while Kali is in the hospital, so she doesn’t lose the vital support system that helps her live with dignity and comfort. She will need a specific hospital bed for the rest of her life and medicaid will not fund it. This will reduce Kali's pain and ongoing pressure sores so she can have a better quality of life.

Kali has recorded over two hours of her voice to train a voice clone through a software called ElevenLabs. This will allow her to speak in her own voice using her AAC (Eye Gaze Device) after her tracheostomy surgery. She will likely lose her voice completely and we are working on preserving what we can of her voice before her surgery so she doesn't have a robotic voice. ElevenLabs is a subscription based software adding to the monthly out of pocket expenses for her care.

Kali is in need of specialized dental care. Due to a genetic dental disease, Kali’s teeth have been severely damaged over the years. Her dentist has advised that she needs crowns on all of her teeth to prevent further damage, and the cost of this work is more than $40,000. This is a significant expense that is necessary for her well-being, as her teeth are prone to infections and pain.

Kali is an incredible person, always staying positive in the face of immense challenges. Despite everything, she remains grateful for the love and support of her family, her caregivers, and her friends. Her strength, resilience, and gratitude are nothing short of inspiring. She has a remarkable ability to focus on the silver lining, no matter how difficult things get.

As her brother, all I want is for Kali to feel as comfortable as possible for her remaining days. Your support can make a huge difference in helping us provide her with the care, comfort, and stability she needs to maintain a sense of normalcy in her life.

Thank you for reading, and for any help you can provide—whether through a donation or sharing her story.

With love and gratitude,

Spencer Hauck