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Nashville Boy Brings Awareness To Rare Health Condition

Posted at 10:54 PM, Aug 03, 2017
and last updated 2017-08-04 00:04:18-04

A Nashville boy brought attention to the rare health condition, CLOVES Syndrome on Cloves Awareness Day, August 3. 

Kayden Ivey, 10, lives with CLOVES Syndrome, a rare health condition that affects a child's vessels, bones, skin and causes tissue overgrowth. 

In 2013, doctors in Cincinnati diagnosed Kayden with the syndrome.

Only 200 children in the world have been diagnosed with it. Kayden is currently the only child in Tennessee to live with it. 

"Since he's been born, I've never gone a whole year without him being admitted in the hospital," his mother Brittany Ivey said.

CLOVES Syndrome stands for Congenital, Lipomatous, Overgrowth, Vascular Malformations, Epidermal Nevi and Spinal/Skeletal Anomalies and/or Scoliosis.

Some children have a variation of symptoms but Kayden has all six.

"The first thing they ask me, 'why is your hands so big' so I'll be like, I don't know God made me this way," Kayden said. 

The pair have traveled to children hospitals in Boston and Cincinnati for doctors to run tests and treatments.

On August 10, Cincinnati doctors will perform a surgery in order for Kayden's hands to stop growing.

"My hands are the adult size actually, so they're going to try and figure out what to do about my hands," he said.

This 10-year-old boy loves playing video games and playing sports but he'll have to put that on hold post-surgery. 

"My fear with Kayden is for him to give up, that's my fear," Brittany said. 

Like all moms, Brittany wants the best for her son. 

Earlier this year, the Make-A-Wish Foundation granted Kayden's wish to the NBA playoff finals to see his favorite player Steph Curry of the Golden State Warriors.

His mom cheering him on along the way.

"Although I know having CLOVES Syndrome is nothing fun, but when he sees everybody's behind him screaming Team Kayden, Team Kayden it just makes it easier," Brittany said.

"She's my number one supporter every day, I love her to death," Kayden said.

To help with medical costs, Brittany makes #TeamKayden shirts and bracelets. 

She can be contacted via Facebook and also with a GoFundMe account. You can also follow his journey on Instagram at @purpose_01.