Our Family Needs Help Caring for Our Daughter as Her Rare Disease Rapidly Progresses

Hello, and thank you for taking a moment to read our story. My wife and I recently moved from Michigan to Florida, hoping for a fresh start after years of cold winters. Along with us, we brought my wife’s daughter, whom we moved from Oregon so she could receive better support and medical care for her Wilson’s Disease—a rare genetic disorder that causes dangerous copper buildup in the body.

For those unfamiliar, Wilson’s Disease can severely damage the liver, brain, and eyes. Symptoms range from fatigue and jaundice to neurological issues like tremors, difficulty speaking, swallowing problems, and changes in personality or cognition. Without proper care, it can be life-threatening.

When she was just 20 years old, she had a catastrophic flare that caused such severe liver damage she was placed at the top of the transplant list. After months of preparation in Seattle, she miraculously recovered without needing a transplant—something we still consider a blessing.

Thirteen years later, however, her condition has begun to progress again. She started experiencing neurological declines, so we brought her to Florida and moved her into our small Airbnb rental home, giving her a safe place to live while still allowing independence. She spent part of her time there and part with us, and for a while it felt like things were stabilizing.

Watching someone so full of life slowly lose pieces of herself has been devastating. Her neurological decline has accelerated in recent months, and before we could move her fully into our home for constant support, the unthinkable happened. A tragic accident caused a fire that burned the entire rental home to the ground. She survived, thankfully—but everything she owned is gone, and the home itself was a total loss.

Now we are facing not only the emotional weight of her rapidly declining health, but also the financial aftermath of the fire: cleanup costs, destroyed belongings, and the ongoing expenses of rebuilding her life from scratch.

The biggest challenge, however, is her medical care.

She currently has no health insurance. Her medications alone cost between $3,000 and $10,000 for just 45 days—and these medications are critical to slowing the progression of her neurological decline. We are urgently working to secure disability, Medicaid, and other assistance, but these processes take time, and her condition is advancing now.

Her symptoms have become severe: uncontrolled tremors in her hands and arms, difficulty eating and swallowing, trouble walking, loss of balance, and significant changes in speech and cognitive function. The long-term prognosis is heartbreaking, and we are doing everything we can to preserve her quality of life while we still can—helping her experience the places and moments that matter to her before her abilities decline further.

We are asking for help because we simply cannot do this alone.

Your support will go directly toward:

Any amount, no matter how small, makes a meaningful difference. We are deeply grateful for your kindness, compassion, and willingness to help during this overwhelming moment in our lives.

Thank you from the bottom of our hearts for reading, sharing, and supporting our family.