[Suzanne Malveaux, Cnn Anchor:] It is mysterious, frustrating and even frightening. Little is known about it. We are now shedding light and going in-depth on a killer disease. It is called ALS. It stands for amiotropic lateral sclerosis. It kills more than 100,000 people a year, it moves fast taking away people's abilities to control their muscles causing patients to quickly lose their ability to speak, swallow, breathe or move. On Tuesday, I shared my mother's story. She was diagnosed with the disease a year and a half ago. The disease forces her to breathe with a machine. She has a great attitude, getting around in a motorized wheelchair and enjoying our family. Technology is improving ALS patients' quality of life in many ways. One of them is former NFL player, Steve Gleason. With the tap of the toe or a blink of an eye, Gleason and others are redefining what it means to be alive. Here's his story.
[Malveaux:] It was the play that brought back the city of New Orleans. Saints' Steve Gleason blocking the punt that would send his "who dat" nation to victory. The win was especially sweet because it was the Saints' first home game in the Superdome since Hurricane Katrina. In that moment, Steve Gleason, the handsome, 5'11", rock-solid 212-pound safety instantly became a New Orleans hero. But five years later, in January of 2011, at age 33, Gleason got the shocking news, he was diagnosed with ALS, or Lou Gehrig's disease, a fatal condition that would soon paralyze him and rob him of his abilities to speak, eat or breathe.
[Dr. Jeff Rothstein, Als Specialist:] It's a disease where the cells in your brain and spinal cord, the cells that control our muscles slowly degenerate. They die.
[Malveaux:] When I met Steve and his wife, Michelle, at their New Orleans home in March, I was struck by just how young and how beautiful they are. Their playful relationship and his flirtatious smile.
[Michelle Gleason, Wife Of Steve Gleason:] He was just like this big he-man strong guy, and he's still strong in certain places but it's a huge contrast.
[Malveaux:] Two years into the disease, Steve is paralyzed, and uses his synthetic voice to speak for him.
[Steve Gleason, Nfl Player With Als:] It has not been easy.
[Malveaux:] Steve recently was thrust into the spotlight after three Atlanta radio deejays mocked him using a fake automated voice as his own.
[Unidentified Radio:] Knock knock. Who's there? Smother. Smother who? Smother me. Do me a favor.
[Malveaux:] The deejays were fired and apologized to Steve later. Steve issued a statement saying, "Received and accepted. We have all made mistakes in this life. How we learn from our mistakes is the measure of who we are." Steve says he's changed, too.
[Steve Gleason:] My capacity to love and to love myself, to be loved has been exponentially increased since my diagnosis.
[Malveaux:] When Steve first got the diagnosis, he and Michelle were faced with a critical decision, whether or not to have a child.
[Michelle Gleason:] In reality, I don't know what I was getting myself into or what he was getting himself into
[Malveaux:] When Rivers was born, Steve also knew he'd soon lose his ability to speak, so he started recording bedtime stories that he plays for Rivers today.
[Steve Gleason:] Papa Pea would fling little pea off a spoon.
[Malveaux:] They also made a decision to go public with the disease.
[Steve Gleason:] This is the first time I've been in front of any cameras since we went public in September, so obviously I don't know how to move or talk quite the way I used to.
[Malveaux:] Launching the No White Flags campaign. At the Super Bowl in 2012, he teamed up with one of his mentors, former Ravens linebacker, O.J. Brigantz, who also has ALS. Steve recruited star NFL players and coaches to generate this dramatic PSA.
[Unidentified Male:] You can't move your fingers. Your mind keeps working but your body doesn't respond. Soon you can't hug your mother or pick up your child.
[Malveaux:] While he doesn't believe the head injuries in his football career led to the disease, researchers are looking into the possible link. But Steve is looking at technology to improve the quality of life for those with ALS. He's raised millions of dollars to build a state-of- the-art facility in New Orleans for ALS patients.
[Michelle Gleason:] Control the A.C., turn on lights and working on their computers.
[Malveaux:] It's outfitted with eye-tracking technology like that in his home to give residents the ability to control everything around them. But even with all this, Michelle says they have their difficult days, most recently as they prepared for a dinner date.
[Michelle Gleason:] He's in the suit, just pissed-mad at the world, actually, drove into our office and drove him into the closet and got stuck and started crying, so I started crying, called my mom and said we're not going to come. So she started crying. Ten minutes later after we both sobbed, we said look we're going to do this.
[Malveaux:] And they are doing it. Steve marked his one-year anniversary with ALS with a skydive. He also sponsors adventure trips for other ALS patience, recently trekking up Machu Pichu and canoeing down the Missouri River. Steve says most people live as if they'll never die so that's why he's living life to the fullest.
[Buddy Valastro, The Cake Boss:] She's not doing that well.
[Malveaux:] Buddy joins us next live after the break.