As a high school senior, Michaela Layton had always been healthy and had perfect attendance. So when the Spring Green, WI, teen began having flu-like symptoms and had to stay home from school, she didn’t think much of it.
“I had blamed my mom for making bad tacos because I never got sick,” said Michaela, now age 24.
The illness plaguing the then-17-year-old ended up being much more serious. At UW Health in Madison, doctors diagnosed her with a rare, progressive genetic condition called Wilson’s disease, which is caused by the buildup of copper, according to the National Organization for Rare Disorders (NORD). In Michaela’s case, the copper built up in her liver and was causing organ failure.
Thanks to an organ donation, Michaela is alive, having recently graduated from college and hoping to work at the institution that helped save her life. Still, since her miraculous recovery, Michaela and her mom, Wendy Layton, continue to speak out to raise awareness of the importance of organ donation.
Numbered days
Wilson’s disease is very rare. Untreated, the condition is fatal, according to NORD. So as soon as Michaela was diagnosed, doctors put her on the transplant list. “I had days to live without it,” Michaela recalled doctors telling her.
Transplants aren’t always a perfect match, nor are they abundant. According to the Health Resources and Services Administration, over 113,000 men, women, and children are on the national transplant waiting list as of January 2019. Each day, 20 people die waiting for a transplant.
As Michaela waited for a match, her health ailed, and two days before her transplant surgery, she stopped talking and went into a coma.
Yet the effects of the transplant she ended up receiving, Wendy said, were instantaneous.
“Two hours after [the surgery], she was sitting up in a chair, and within six hours, she was walking around,” said Wendy, who described the situation as “surreal” and “overwhelming.” “It dawned on us that this was a gift that somebody gave to us — that somebody had to go through a loss for us to be in this happy mode.”
Giving back
Michaela and Wendy are in touch with the mother of Michaela’s donor, who died from a gunshot wound. Michaela said that the night he died, her donor, named CL, had posted on Facebook that he wanted to move from his hometown and “become a better person.”
Little did he know, CL was already a good person, Michaela said. “He lived such a hard life, and then he gave life to me,” she explained, adding that CL also donated a kidney to his stepfather.
Wendy added: “Her life is going to be donated to CL, in showing that she can do as good as he did for the world. Because of him, she can do that.”
In her speaking work, Michaela is hoping to raise awareness of the importance of becoming an organ donor and to help dispel myths about the act. One misconception she hears often is that being an organ donor dissuades emergency medical responders from saving you if your life is in danger because of the dire need for more organ donors. “They do absolutely anything they can to save your life. Once brain death has been declared, they can consider donation,” Michaela said. “That myth is for sure not true.”
That being a transplant recipient means you’ll be completely healthy afterward is another misconception, Wendy noted, explaining that Michaela must get monthly blood work done and take medications to manage her health.
But Michaela isn’t letting her experience with Wilson’s disease, or her new life as a transplant recipient, stand in the way of her dreams of changing the conversation around organ donation.
“If every time I speak I can have one person really change their mind about being an organ donor — if I can convince them it’s the right thing to do — I’ve done my job,” she said.
Melinda Carter, [email protected]
