Tom Daley made history in 2012, becoming the first American ever to be diagnosed with the rare neurological disease that bears his name.
Diagnosed as an infant, the now-30-year-old Daley survived months of hospitalization and surgeries before ultimately receiving a life-changing stem cell transplant to cure the disease, which attacked his spinal cord.
On Tuesday, Daley shared new details about his journey, shedding new light on a disease that once struck his family and rooted its very core.
In a live Facebook conversation with his daughter Poppy and several others, Daley, who lives in St. Louis, detailed his diagnosis as a newborn, when his parents felt a “pressure” in his chest.
“My dad had a finger that was pressed against the back of my neck,” Daley said. “We were thinking the worst.”
Following an an MRI, doctors found the amyloid plaques that tend to cause amyloidosis. Amyloidosis happens when a person’s own bone marrow produces amyloid proteins, which can accumulate in the nerves and cause inflammation, scarring and the possibility of death.
Daley had been diagnosed with the illness and spent nearly six months in rehab before he was given a transplant in 2015 that saved his life.
Doctors found several amyloid plaques in Daley’s spinal cord but said he showed no signs of pain in 2011. But the next year, a team of doctors came to recognize this as a potentially life-threatening condition that may strike Daley again.
Daley said he was so tired that “I literally couldn’t stand up by myself for 30 minutes.”
Doctors told him that his blood levels of amyloid protein were five times the normal levels.
“I thought that was just normal,” Daley said. “It wasn’t. It just wasn’t normal.”
When the disease comes back, Daley said the doctors said they will “do everything to try and stop it happening again.”
The illness affects an estimated 500 people in the United States and 10,000 people worldwide.
The Daley family chronicled their journey on their blog, called the Ometz Chronicles.
“I remember that time as a life-changing experience that had a profound impact on who I am today,” Poppy Daley, 12, told WXMI in 2015. “It really set me up for becoming the person I am today. I think it’s just an inspiration to other families, families going through whatever they’re going through, to know that you don’t have to let that get you down, that it can make you stronger and more resilient.”