Biliary atresia is a chronic liver disease in which the bile ducts do not have normal openings and, as a result, a build up of bile damages the liver. A common symptom of biliary atresia is stunted growth, which is evident in Robertson’s small stature. The rare disease has been the root of his frequent hospital stints since his first liver transplant at the age of 1, and he once spent a full year in a coma.
At tonight's 25th Annual ESPYs, Robertson will be presented with the Jimmy V Perseverance Award. The show is dedicated to the recognition of the world’s most talented athletes, but in years past, the athletes – who on any other night are revered like few others – have become a footnote to the speeches given by awe-inspiring recipients of the Jimmy V award.
"When I heard I was winning an ESPY, I couldn’t believe it," Robertson said in an interview with JimmyV.org. "When I learned more about the V Foundation and the inspirational people that have won before me like Eric LeGrand, Stuart Scott and Craig Sager? Man, I was honored. It’s a blessing.”
The award, inspired by former college basketball coach and bone cancer patient Jim Valvano, is presented annually to a deserving member of the sports world who has overcome a significant obstacle through perseverance and determination. In 1993, Valvano was presented with the inaugural Arthur Ashe Courage Award, which still lives on, after his diagnosis. He died one month later.
In his speech, Valvano successfully made people laugh, think and cry – 3 things that he stressed everybody do at least once every day – and announced the inception of the Jimmy V Foundation for Cancer Research, which, as of today, has raised more than $150 million and awarded cancer research grants in 38 states and the District of Columbia.
“I urge all of you, all of you, to enjoy your life, the precious moments you have,” Valvano said. “Spend each day with some laughter and some thought, and get your emotions going.
“We are starting the Jimmy V Foundation for Cancer Research, and its motto is, ‘Don’t give up... don’t ever give up,’ and that’s what I’m going to try to do every minute that I have left. I will thank God for the day and the moment I have. If you see me, smile and maybe give me a hug. That’s important to me too. But try if you can to support, whether it’s AIDS or the cancer foundation, so that someone else might survive, might prosper and might actually be cured of this dreaded disease.”
In 2007, 14 years after his death, the inaugural Jimmy V Perseverance Award was presented to another basketball coach, Kay Yow. Other previous recipients have included former college football player Eric LeGrand, who was paralyzed during gameplay, and the late broadcasters Stuart Scott and Craig Sager, who died of appendix cancer and acute myeloid leukemia, respectively.
“I also realized something else recently,” said Scott. “I’ve said ‘I'm not losing. I'm still here, I'm fighting. I'm not losing.’ But I've got to amend that. When you die, that does not mean that you lose to cancer. You beat cancer by how you live, why you live and in the manner in which you live.”
“When doctors tell you you have three weeks to live, do you try to live a lifetime of moments in three weeks? Or do you say, ‘To hell with three weeks?’” Sager asked. “When doctors tell you your only hope of survival is 14 straight days of intense chemotherapy, 24 hours a day, do you sit there and count down the 336 hours? Or do you see each day as a blessing? Time is something that cannot be bought. It cannot be wagered with God. And it is not an endless supply. Time is simply how you live your life.”
The ESPYs will be hosted by former Indianapolis Colts and Denver Broncos quarterback Peyton Manning tonight at the Microsoft Theater in Los Angeles at 8 p.m. ET, and will air live on ESPN.
For updates on Jarrius' condition, and the condition of other notable rare disease patients, follow Rare Disease Report on Facebook and Twitter.