PULLMAN, Wash. -- Steve Gleason’s inspirational story from NFL star to ALS patient is well known. The former Gonzaga Prep and WSU standout’s mother is on a journey of her own, both fighting against and finding inspiration through her son’s devastating diagnosis.
PHOTOS: Steve Gleason's football career through the years
The effects of ALS have produced a dramatic transformation in the appearance of the once-robust athlete, with the disease destroying his muscles.
"Every time I see him it takes my breath away,” said Gail Gleason. “I have to watch my facial expression and take a deep breath and give him a kiss and a hug and go to myself, ‘oh my gosh, this is my baby boy.’’’
Steve's mother Gail quickly learned ALS (Amyotrophic lateral sclerosis) mounts an unfair fight.
"When I think it can't get worse, it gets worse," Gail said.
Gail Gleason works with students at Washington State University. Her office is dotted with reminders of Steve as a football player and now as a family man with wife, Michel, and son, Rivers.
Most days, the photos bring comfort. On other days, they prompt a wave of grief.
“Sometimes I get up and leave work and they know if I suddenly disappear, there's a reason. Because it will just hit me,” said Gail.
In spite of those times, Gail makes a point not to settle for indefinite sadness, instead taking cues from her son.
"I don't want to get out of bed this morning, but I bet Steven's getting out of bed, so I think I will,” said Gail.
According to his proud mom, Steve began beating the odds from the start.
As a boy, Steve Gleason had to wear his shoes on the wrong feet because his feet turned in.
"The first doctor that we went to said when he was 15 he would need surgery and he would never be able to run,” said Gail.
The doctor was wrong.
Steve grew into a fierce competitor in several sports. In his early teens, he was intent on becoming an Olympic soccer player. He excelled at baseball, too, later starting for Washington State University. But when he found football at Gonzaga Prep, Steve felt at home on the field.
"I thought it was great. There were only a few times where I went, ‘ew, that's my kid. Don't hit him. Don't hit him so hard.’ But it was mostly ‘Steven, don't hit them so hard!,’” said Gail.
Gail didn't have to worry so much about her son. He was strong and smart. He became a pro athlete. He married a wonderful woman. Life was good.
Then came a startling call.
"He called one day and he said ‘mom, I just fell flat on my face in the parking lot at Whole Foods,” said Gail Gleason.
It was the first sign something was terribly wrong.
It was nearly three years ago when Gail travelled to be with her son as a doctor delivered the devastating diagnosis.
"He got us all in the room and he said, 'I hate to tell you this, but you have ALS,' and Steve said, 'how many times have you been wrong?,’” said Gail.
The news pushed Gail and Michel to tears but Steve was already moving on. He wasn't ready for his light to dim, living a no white flags motto.
He founded Team Gleason to raise awareness about ALS and support the search for a cure.
“It's either sit there and cry and, as he says, fade away or let's fight this thing."
Not long after his diagnosis in 2011, Gail was with Steve as he slowly raised a fist to the crowd before a Saints game. It was if he was showing the world he wasn't giving up.
"The whole place just erupted,” said Gail.
Even though today Steve is no longer able to walk, Team Gleason carried him along a treacherous trail to the top of Peru's Machu Pichu.
"Hey, I need to go live my life like that. There's times when I just want to sit down and I go, ‘I can't,’ said Gail. “I have to go do something cool today, you know?”
People often ask Gail if she wishes Steve never found football - that perhaps the ravages of the sport opened the door for his disease.
"The disease is so under-studied,” said Gail, “we don't know enough to be able to say that."
The lack of information is troubling, which is why Gail and Team Gleason are working to change that.
Someday, she hopes Steve will benefit from a breakthrough.
"I hope he gets to sit on the front porch with his grandchildren saying he beat this thing. That's what I hope,” said Gail.
At the same time, she is keenly aware that statistics say his time is short.
"When he was born, I put him in the Lord's hands and I still put him there. And when the time is right, God's going to take him,” said Gail.
Until then, Gail will support her son with every fiber she has to give, just as she has done since he was a baby.
She is comforted knowing her little boy grew into a great man with incredible life lessons to share.
"It's not about the end. It's about today because we have today and we don't know about tomorrow,” said Gail. “None of us do, and so we have to live today the best that we can."