Hello. I am Kayleigh, and I want to tell you a little story about a girl named Morgan, the warrior princess of Olalla. Mojojojo. Sodomojo. The most amazing little sister who I’d move mountains for—and have. Other people have moved mountains for her, too, which we appreciate so much. All of Morgan’s army.
Morgan was diagnosed with Juvenile Huntington’s Disease, a neurodegenerative disease that is genetic, at the age of 15. With a life expectancy of 5 to 10 years from her first symptoms (which started at 12 for her), Morgan has fought the longest and hardest battle that no one should have to endure. From feeding tubes to teratomas, this girl has been through everything and won each battle with a triumphant smile. If Morgan needed special equipment, we would buy it. She got the utmost care from her whole care team, including us. Her doctors have said the only reason she lived as long as she did was because she had excellent in-home care. But really, it was because she wanted to live her life to the fullest. Who were we to deny her that? She wanted to fight so she could see another ocean. To see another sunset. To catch another fish. To camp. To laugh. To road trip. To sing. To raise awareness. To find a cure. To experience joy. And we helped make that happen for as long as we could.
Morgan always had a wicked sense of humor and a smile that brightened the room. If someone met her, they would always remember her, because she was just that inspiring and amazing. She was always down to go out and do things—explore the world and live every moment like it could be her last, because it could have been.
The rules were always simple. If Morgan thought we should do it or thought it was funny, then we were doing it. If Morgan needed special equipment, then we were buying it. If Morgan wanted to go to the ocean and get her feet wet, we would get a beach wheelchair so she could smell the ocean and feel the surf on her feet. I didn’t make the rules—I just abided by them.
Unfortunately, every story has an ending. In the last year, her health significantly declined. The bad days were outweighing the good. She was having seizures. She was hurting. But even being home on hospice, she was still trying to fight, because that’s all she has ever done—fight. We had to tell her it was time to stop fighting.
On June 4th, 2025, at 27, Morgan dropped her sword and surrendered for the first time in her life.
For the people who didn’t know her but are reading this: you missed out on meeting a very special human being—one of those people who change your perception. For her army and the people who knew her, you know how great of a person she was.
We are having to figure out a way to help cover funeral costs. I moved back home from Arizona to help with Morgan’s 24/7 care. My mom has been caring for her her whole life and making sure she got everything she ever wanted or needed, including things that aren’t covered by insurance. The state doesn’t pay a whole lot for in-home health care. A lot of the time, it feels like the state is taking advantage of the family members who care about their people. We both will qualify for unemployment, but who knows when that will kick in or how much it will be. My mom is worried her small buffer of a savings account will be gone just from the costs of cremation and a memorial service for her. If you could please help donate toward the cost of her funeral—and maybe a little buffer while we figure out how to grieve and handle what’s next—it would be so appreciated.
