SPRINGDALE -- Aaron Childress has days when he just wants to pick up a basketball, dribble full-speed down the court and swish a shot.
Like most 11-year-old boys, Childress was afforded this simple pleasure for most of his young life, playing the game he loves. He tried soccer at a younger age, but basketball soon became his true passion.
At A Glance
What Is Marfan’s Syndrome?
• A genetic disorder in which the body’s connective tissue is abnormal. Connective tissue helps support all parts of your body and helps control how your body grows and develops.
• Marfan’s syndrome most often affects the connective tissue of the heart and blood vessels, eyes, bones, lungs, and covering of the spinal cord. Because the condition affects many parts of the body, it can cause many complications. Sometimes the complications can be life threatening.
• About 1 out of every 5,000 people in the United States has Marfan’s syndrome. Men, women, children and people of all races can have the condition.
• Marfan’s syndrome has no cure, but treatments can help delay or prevent complications. Treatments include medicines, surgery and other therapies. Limiting certain activities or changing how you do them may help reduce the risks to the aorta, eyes and joints.
• Advances have been made in early diagnosis and treatment of Marfan’s syndrome. It’s now possible for people who have the condition to live longer and enjoy a good quality of life. Many people who have Marfan’s syndrome and are properly diagnosed and treated may live an average lifespan.
Source: National Heart, Lung And Blood Institute
"I always played with my brothers," he said. "It's been my favorite sport for a long time. I just want to play all the time."
He wants to play. He'd give almost anything to play.
The Diagnosis
On Sept. 15 of this year, Childress and his family received the diagnosis they feared. Aaron, a tall, slender young boy who attends Monitor Elementary in Springdale, was screened for Marfan's syndrome, a genetic disorder that affects the connective tissue in the body. The family had suspected Marfan's since he was 5 years old, as he possessed many of the physical traits associated with the syndrome. Poor vision, a long wingspan, extra large feet for his age. All signs of Marfan's, and all signs Childress showed.
"Aaron was screened for Marfan's when he was 5, and we were told he did not have it at that time," his mother, Maribel Childress, said. "So we thought we were free and clear. And then medical technology changes, and you find out things about genetics that you didn't know when he was 5 that they do now."
For the Childress family, the news was both heartbreaking and scary. For Aaron, the diagnosis was even more bleak: no more basketball.
"I just like all of it," Aaron said. "I like playing; I like watching."
Studies show Marfan's affects one in every 5,000 people. With the diagnosis hitting Aaron at such a young age, finding other alternatives for an active child was a first order of business with his parents.
With Marfan's, excessive physical activity isn't possible since it affects many body systems including heart and blood vessels. With basketball no longer an option, Childress needed an alternative.
"After we got Aaron's diagnosis and found out he couldn't play anymore, I emailed his coach to let him know he wasn't going to be at practice," Maribel Childress, said. "Coach Conley was very upset and very disappointed and said, 'Aaron is a part of our family, and if there's anything he wants to do to stay a part of our family, let us know.'
"At the time I didn't tell Aaron because I didn't know if he was ready to go back or what he was thinking. It was still so fresh, and I didn't want to make him sad. As a mom, I'm suggesting other things and asking him, are you interested in guitar or photography?"
None of that appealed to him. Basketball was his love, and he wanted it to remain a big part of his life.
Said Maribel Childress: "Aaron said, 'Mom, all I want to do is basketball. Call coach Conley and see if I can still come to basketball. I want to be a basketball coach, and I still want to keep learning and growing, so call and see if that's something I can do.'"
'Little Isaiah'
Basketball and Marfan's are linked together, not only in this story, but nationally. For most people, Marfan's syndrome begins in Waco, Texas, just a summer before Aaron's own diagnosis this fall.
Isaiah Austin has become the public face of Marfan's. A 7-foot-1 center on the Baylor University basketball team, Austin was destined for a career in the NBA when a diagnosis of Marfan's syndrome changed his path forever.
Just before the NBA Draft in June, Austin -- expected to be a first-round pick after declaring for the draft following his sophomore season at Baylor -- received shocking news when he learned five days prior to the draft of his Marfan's diagnosis.
Interestingly, Aaron already knew of Austin before either was diagnosed. The news of his favorite player hit Aaron hard.
"I was kind of mad because he was really good," Childress said. "And I wanted him to play really bad."
Childress and his family watched the news close as Austin went through his painful and difficult situation. Once a sure-fire NBA prospect, the budding star was forced to quit basketball immediately.
NBA commissioner Adam Silver chose Austin as his guest of honor at the NBA Draft, and the league selected him with a ceremonial pick. But the sting of no longer playing basketball was real.
Aaron Childress had no idea at the time Marfan's would also hit him the same way.
Not Alone
Childress isn't the only young boy affected by Marfan's as many young children live with the genetic disorder. But the connection between Isaiah Austin and Aaron Childress is a story that runs much deeper than two people battling through similar health issues.
Their story is an amazing path of parallel circumstance that ends through a tunnel of strength and hope.
Both Austin and Childress are tall beyond normal standards. Both have trouble with their vision as Austin is even blind in one eye. Both had been tested for Marfan's many years before, being told at the time they didn't have the syndrome, only to find out later that they do.
But for these two, the shared path is more than that.
Through a family friend at Baylor, the Childress family frequents women's basketball games in Waco. On one visit two years ago, two Baylor men's basketball players spotted Aaron.
"We were watching a women's game, and of course, the men's team was on campus. So the men had come to watch the women's game, and at some point during the game, Aaron walked by and two of the men's players called out to Aaron, 'Little Isaiah!'" Maribel said. "This was before Aaron and Isaiah knew each other. Those players saw this tall boy and were like 'Little Isaiah.' And we didn't even see Isaiah that night.
"At the time, Isaiah was playing in sports goggles and Aaron has goggles and they're both tall, and I'm sure the guys noticed his wingspan and Aaron had on his goggles. So it kind of stuck, and ever since then when Aaron had a great game, we would sort of tease back and say, 'Little Isaiah, great game!' And that just kind of stuck."
The connection was born. Without even meeting Isaiah Austin, Aaron had a favorite basketball player to look up to. As "Little Isaiah" continued to excel on the basketball court, so too did big Isaiah. They were connected and didn't even know it.
"They had that connection ever since Isaiah's freshman year at Baylor," Maribel, said. "And since then we would watch Isaiah's games, and we would watch for things in the news. So when he left school to enter the draft, we were following to find out what would happen. And when we found out he wouldn't be able to enter the draft because of Marfan's, our whole family was sad because we had created this connection to Isaiah.
"We had read all the articles and watched all the interviews, and we were just really impressed with what a great young man of character he was. So it was great for our family, because this summer we had those conversations about how impressive he was and how he handled it."
Dream Again
Aaron wanted to be back on the basketball court as soon as possible after his Marfan's diagnosis. His coach, Conley Clarke, wanted the same thing. They just needed to figure out in what capacity.
"His mom came to us and told us, Aaron has this (Marfan's syndrome), and he can't play," Clarke said. "And as someone with kids, as devastating as it was to me, I can't imagine what it was like to her and to him.
"She said, 'He's never going to be able to play basketball again.' So I just told her, 'I don't want him out of our program. Would he like to coach? Anything he'd like to do.' And the next day she texted me and said Aaron would love to do this."
The details were worked out and almost immediately the focus switched from Aaron Childress the basketball player to Aaron Childress, basketball coach. Just days after learning he'd never be able to play competitive basketball again, he was back in the game he loved.
"I'm still learning how to coach," Aaron said. "I feel like I talk more to the players now. I feel like I give them more advice."
Clarke said he's ready to give Aaron whatever tips are necessary to help him achieve his new goal. With his new coaching shirt and a few pointers to boot, Childress is well on his way.
"He's definitely got an eye for basketball," Clarke said. "I think he'll be a great coach someday. We told him that we don't know how much we'll be able to teach you, but we'll teach you everything we know."
While Aaron is busy learning his basketball coaching skills, he might be the one providing the biggest lessons as he deals with a life-altering medical diagnosis.
"You know you can go one way, where you can go to the dark side. Or you can go right, and he's definitely handled something like this the right way," Clarke said. "I don't know if I would handle a situation like this as well as he has."
Meeting His Hero
The similarities between Childress and Austin are striking. But many other close connections have helped to bring this tale full circle. Clarke's son, former Arkansas and Butler basketball player Rotnei Clarke, played for current Boston Celtics coach Brad Stevens at Butler. As soon as Clarke heard of Childress' diagnosis, he made a phone call to Stevens.
"Before I could even get off the phone, coach Stevens had sent Aaron a letter," Clarke said. "You hear the stories about what a great guy coach Stevens is, but it's true."
Aaron and Isaiah had been bonded well before the Marfan's syndrome diagnosis, when "Little Isaiah" was discovered by Austin's Baylor teammates. But once their story became more than just similar physical traits, more than just a name, it was time for them to meet face to face.
Isaiah, who spends his time as a student assistant coach at Baylor while working on his degree, first spoke with Aaron over the phone after learning of Aaron's Marfan's diagnosis.
"He asked me what I did at school that day, and he asked me where I was going that day," Aaron said. "And he said we're going to go through this together."
The Childress family has made several visits to Waco, during Austin's time as a player and now student coach. But as fate would have it, Boston would be the place for Aaron and Isaiah's first meeting.
Austin was honored at the Boston Celtics' game against Orlando on Oct. 29 as part of the Heroes Among Us program. Childress, through a Facebook contest, also was invited to attend the same game.
"Aaron got to go out on the floor and give all the players high fives when they came out on court," his mother said. "And they put him up on the big screen."
At TD Garden in Boston on the famed parquet floor, two individuals with an amazing story of perseverance and a deep passion for the game of basketball came together at last.
In so many ways, Aaron Childress and Isaiah Austin have been with each other on this journey every step of the way, inspiring and encouraging one another.
"Aaron, what message has Isaiah taught you that you like the most?" his mother asks.
"I want to dream again," Aaron said.
Sports on 11/30/2014