News and notes on all six Rare Disease Champion finalists


We have hit the halfway mark of the 2015 Uplifting Athletes Rare Disease Champion online voting campaign that launched January 12th and continues until January 31st. Each of the six finalists has a rare disease story that we’ve already shared.

But not every bit of information or quote makes the final version of each story. So here’s one more tidbit on each of the 2015 Rare Disease Champion finalists.

SAMMIE AND KENZIESAMMIE COATES, AUBURN

The first time Coates and Kenzie Ray had a chance meeting in the fall of 2013, Ray gave Coates a bracelet that said “Pray For Kenzie”. She asked the Tigers’ wide receiver if he would wear it. Coates said he would, put the bracelet on his wrist and nearly 18 months later still uses the reminder on his wrist as motivation. That first meeting opened the door for a unique connection that feels more like family than just friends.

Watch this ESPN Gameday video about Sammie Coates and Kenzie Ray

61425 USF EATMON CUQUINTERRIUS EATMON, SOUTH FLORIDA

Eatmon daughter, 2-year-old Melaynna Savannah, is battling a rare disease and his wife, Melyza, was told in her second trimester of pregnancy that there was a problem with the baby’s brain development. But fighting through adversity was nothing new for Eatmon. He blacked out at school midway through his senior season in high school and was required to have a cardiac ablation to correct a heart-rhythm problem. As his playing time on the field diminished because of the surgery, the scholarship offers faded. But in the recovery room after surgery his mother took a call from a USF assistant coach who informed him USF was still interested and a full scholarship was his if would come to Tampa.

NORWOOD 3LEVI NORWOOD, BAYLOR

As the Baylor Chapter President, Norwood navigated all the obstacles a first-year Uplifting Athletes Chapter can encounter and spearheaded two fundraising events in 2014 for cerebral palsy research. The Baylor Chapter’s Lift For Life and Touchdown Pledge Drive combined to raise more than $9,000.

DAN AND CASEY O'BRIENDAN O’BRIEN, MINNESOTA

O’Brien and his wife, Chris, had enough on their plate already with three children and a busy schedule. But when Casey was diagnosed and told the first step was full knee replacement surgery and chemotherapy treatment for the tumor, a long hospital stay was on the horizon. But the O’Brien’s made sure it was a team effort. For nearly 100 days Chris took the day shift with Casey and Dan was the night watchman.

Watch this video on the O’Brien family story from KARE11 TV

MARCUS RIOS 3MARCUS RIOS, UCLA

Rios’ condition is so rare, and took several incorrect diagnoses before doctors finally figured out what was wrong, Rios is going to be featured on an upcoming episode of “Monsters Inside Me.” The television show on Animal Planet features people who are victims of parasites that live on or in another species, which serves as hosts from which the parasite gains nutrients. Rios’ episode was filmed last summer as he prepared to return to playing football.

STEVENS PHOTO 1GREG STEVENS, EASTERN ILLINOIS

Part of the treatment for Stevens’ rare disease is a bone marrow transplant. After four months of chemotherapy and continuing to coach all season, Stevens admitted his energy level was greatly impacted by the long haul. But he needed the procedure to complete the treatment protocol, so shortly after the season underwent a successful bone marrow transplant and is now back home recovering.

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