Push to the Finish

When Lucas was born in 2007, everyone expected that he and Noah would someday run and play together. But their parents noticed troubling signs when Lucas was a few months old. He couldn’t roll over like other babies his age. He arched his back and cried for hours. Doctors scanned Lucas’s brain using an MRI machine, which images internal body parts. They saw that something was seriously wrong.

Ordinarily, the surface of the human brain is covered with ridges and grooves, giving it a bumpy appearance. But the surface of Lucas’s brain was unusually smooth. The diagnosis: a rare disease known as lissencephaly, which means “smooth brain” in Greek (see What Is Lissencephaly?). The condition is usually caused by a flaw in a gene—a unit of hereditary material that contains instructions for the body. “Unfortunately, that gene is involved in brain development,” says Dr. Gary Clark, chief of neurology at Texas Children’s Hospital.

Lucas was born in 2007. Everyone thought that he and Noah would run and play together someday. But their parents became worried when Lucas was a few months old. He couldn’t roll over like other babies his age. He arched his back and cried for hours. Doctors scanned Lucas’s brain using an MRI machine. It creates images of parts inside the body. They saw that something was seriously wrong.

Normally, the surface of the human brain is covered with ridges and grooves. That makes it look bumpy. But the surface of Lucas’s brain was quite smooth. Doctors said the problem was a rare disease called lissencephaly, which means “smooth brain” in Greek (see What Is Lissencephaly?). The condition is usually caused by a flaw in a gene. That’s a unit of hereditary material that contains instructions for the body. “Unfortunately, that gene is involved in brain development,” says Dr. Gary Clark, chief of neurology at Texas Children’s Hospital.

Then, when Noah was 8 years old, he saw a video of two brothers, one of whom was disabled, competing in a triathlon together. “I just wanted to give that experience to Lucas,” he says. But participating in such a grueling race wouldn’t be Noah’s only challenge. “First, I had to learn how to swim,” says Noah. “I really had to get with it if I wanted to make it to the race deadline.” He trained hard at the local YMCA, with Lucas accompanying him.

Then Noah saw a video when he was 8 years old. It showed two brothers competing in a triathlon together. One of them was disabled. “I just wanted to give that experience to Lucas,” he says. Taking part in such a difficult race wouldn’t be Noah’s only challenge. “First, I had to learn how to swim,” says Noah. “I really had to get with it if I wanted to make it to the race deadline.” He trained hard at the local YMCA. Lucas went with him.

On race day, Noah wasn’t sure he was ready, but he was determined to try. After swimming 183 meters (200 yards), he pulled himself dripping from the water and climbed onto his bike. He pedaled for 8 kilometers (5 miles) in the summer heat, pulling Lucas behind in a cart. When his tired muscles burned, he glanced back, and Lucas’s smile urged him on. Finally, Noah jumped off the bike and ran 1.6 km (1 mi), pushing his brother’s stroller. When they crossed the finish line, Lucas’s face said it all. “He was just the happiest I’ve ever seen him,” says Noah.

Race day arrived. Noah wasn’t sure he was ready, but he was determined to try. He swam 183 meters (200 yards), and then he pulled himself from the water. Dripping wet, he climbed onto his bike. He pedaled for 8 kilometers (5 miles) in the summer heat, pulling Lucas behind in a cart. Noah’s tired muscles burned. He looked back, and Lucas’s smile urged him on. Finally, Noah jumped off the bike and ran 1.6 km (1 mi), pushing his brother’s stroller. When they crossed the finish line, Lucas’s face said it all. “He was just the happiest I’ve ever seen him,” says Noah.

To date, Noah and Lucas have finished 23 triathlons together. The family celebrates any progress Lucas makes on his own. For example, he has learned to use an eye-tracking device. He can select simple ideas, such as “yes,” “no,” or a request to watch TV, by gazing at boxes on a computer screen. Because of the complications that can arise from lissencephaly, the brothers don’t take their time together for granted. But they won’t let the uncertainty of the future hold them back either. Their goal is to someday complete an Ironman Triathlon (see Going the Distance).

Many people have been inspired by Noah’s commitment and bond with his brother. But he doesn’t feel like he’s doing anything extraordinary. “I’m just a normal kid doing something for his brother,” says Noah. To him, Lucas is the hero. “He shows me that even if you have challenges, you can overcome them,” says Noah. “Anything is possible.”

Noah and Lucas have finished 23 triathlons together so far. Lucas also makes progress on his own, and the family cheers him on. For example, he has learned to use an eye-tracking device. He looks at boxes on a computer screen to pick simple ideas. Some of them are “yes,” “no,” or a request to watch TV. Because of the problems that can come from lissencephaly, the brothers don’t take their time together for granted. But they won’t let fear of the future hold them back either. Their goal is to someday complete an Ironman Triathlon (see Going the Distance).

Noah’s commitment and his bond with his brother have inspired many people. But he doesn’t feel like he’s doing anything unusual. “I’m just a normal kid doing something for his brother,” says Noah. To him, Lucas is the hero. “He shows me that even if you have challenges, you can overcome them,” says Noah. “Anything is possible.”