In Support of Levi Heiss
Meet Levi, my happy, goofy, Hot Wheels-loving 4-year-old who also loves Paw Patrol, golfing, arts and crafts, and spending time with his big sister, Scarlett. Behind his contagious smile is a little guy who has spent his entire life fighting a battle no child should ever have to face.
At just five weeks old, Levi was diagnosed with PFIC1 (Progressive Familial Intrahepatic Cholestasis Type 1), an extremely rare genetic disease that affects how his liver transports bile. This causes bile to build up in the liver, leading to severe itching all over his body, difficulty growing/developing and progressive liver damage that eventually results in liver failure.
For four years straight, Levi has endured monthly blood draws to monitor his health and liver function, several daily medications, injections, abdominal ultrasounds every 6 months, biopsy procedures, ER trips and many hospital stays. Most recently, he underwent a major biliary diversion surgery all the way in Seattle, in hopes of slowing the progression of his disease and improving his quality of life. Unfortunately, the surgery was unsuccessful, and his condition has continued to worsen. I was recently informed he is now in stage 3 of 4 of liver disease.
Our next and only step to prolong Levi’s life is a liver transplant. Because PFIC1 is so rare, finding specialists experienced with his condition has been extremely challenging. Living in Central Oregon, we have limited local options in general and for rare liver conditions it’s nonexistent, and our insurance doesn't fully cover out-of-state care. I’m now preparing to travel over 2,000 miles from Bend, Oregon, to UPMC Children’s Hospital of Pittsburgh for his transplant evaluation and the transplant itself.
With myself as a single mom and currently in full time school, I’m only able to work part-time, the financial burden of traveling across the country, potential lodging, uncovered medical expenses, food, and time away from work and my family support is overwhelming. This fundraiser will help at least ease those expenses so I can focus on my daughter as well and getting Levi the care he needs.
Your donation will help cover:
- Flights and travel from Bend to Pittsburgh & transportation in Pittsburg and getting back home.
- Lodging (there’s no guarantee we will get into the Ronald McDonald house but it’s our goal)
- Food - hospital food is still an expense
- Out-of-network medical costs and follow up testing and long term care
- Lost income while I’m away from work while bills continue to accrue back home
- Future follow-up care and future travel to get Levi back home
Asking for help doesn’t come easily, but there isn’t anything I wouldn’t do for my little guy. More than anything, I want Levi to have the chance to grow up, make memories, be his sister’s best friend and enjoy being a kid.
Whether you’re able to donate, share his story, or simply keep him in your thoughts, I am forever grateful. Thank you for loving and supporting Levi through this journey. 🩷
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- Created Oct 14, 2026
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Debra Lockwood 15 days ago • with donation