Kayden Ivey (Photo/Brittney Ivey)
The Tennessee Titans helped shine a light on a rare disease a Nashville boy is tackling daily.
Kayden Ivey has CLOVES syndrome. CLOVES Syndrome stands for Congenital, Lipomatous, Overgrowth, Vascular Malformations, Epidermal Nevi and Spinal/Skeletal Anomalies and/or Scoliosis. According to the CLOVES Syndrome Community, it has been diagnosed in about two hundred people so far.
The Titans know the value of teamwork and the importance of National CLOVES Syndrome Awareness Day. On Friday, the NFL team invited to their practice; the only kid in Nashville and the state with the rare condition.
Kayden Ivey says, "It's really fun to have CLOVES day because it tells you: you're not the only one, you're not alone. Some people don't have what I have, so when I tell people they don't know what it is."
Given the recent discovery of this syndrome in 2009, there are likely many more people who remain undiagnosed. People living with cloves often experience neurological complications, pain, and significant and aggressive overgrowth of affected parts of the body.
"My right leg is longer than my left leg. And my hands are bigger than what you expect to be on an 11-year-old," Kayden explains.
The 11-year-old was diagnosed in Cincinnati at age: 6, according to his mother, Brittany Ivey.
"I went everywhere because no one knew what was wrong with my baby. He used to get these big tumors on his back and he's been diagnosed with cancer so many times," Kayden's mom explains,
"I even had a doctor one time tell me: 'enjoy Kayden because honestly if we ever get the money or funding to produce or research, or get a cure for Kayden...Kayden won't get it. It will go to cancer. He's one, it's a million other people.' That's why CLOVES Day is so important to me because it's just him, but don't forget about it....don't forget about my baby."
Source : Nashvile , 5th August 2018
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