Holding on to hope: 35-year-old lacrosse coach at Mater Dei High opens up about ALS diagnosis

"Every day I wake up, it's not just me that wants to do this," said Rodriguez about his fight. "It's the army that's behind me."

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Saturday, March 16, 2024
35-year-old lacrosse coach at Mater Dei opens up about ALS diagnosis
With the help of his lacrosse family and non-traditional treatment, Johnny Rodriguez is holding on tight to one thing: hope.

SANTA ANA, Calif. (KABC) -- At Mater Dei High School in Santa Ana, lacrosse is all about family. Recently, the team's 35-year-old coach Johnny Rodriguez was diagnosed with ALS.

He and his wife Cristina, who is also a lacrosse coach, share an infant son and are currently expecting their second. Now, with the help of his lacrosse family and non-traditional treatment, Rodriguez is holding on tight to one thing: hope.

The power of family, support and faith

Rodriguez has stood tall over the lacrosse program at Mater Dei for a decade. Now, he's looking up at a health journey steeper than Mount Everest, leaving his players full of emotion.

"I couldn't believe it, to be honest," said Mater Dei senior and lacrosse player Michael Ray about the day he heard the news. "It was one of the worst days of my life, honestly. Personally, I love him so much."

Hugo Villalba, a Mater Dei junior, said he even shed tears.

Over a year ago, Rodriguez was dealing with what he believed was just a pinched nerve. In October, he learned he has ALS, the nervous system disease that weakens muscles and impacts physical function and is fatal.

"The doctors literally tell you, 'Prepare to die,'" said Rodriguez. "Like, get your wheelchair ready to go. So, it's just a dark, dark place. We need more optimism."

Cristina is currently 7 months pregnant.

The average person with ALS only lives two to five years, but Rodriguez isn't average. Still, he wonders what life will be like.

"Am I going to get to see my kid graduate from high school? Am I going to get to see him play sports? Who's going to be there to teach him some of the toughest lessons in life? Who's going to be there to tell [Cristina] 'I love you' before bed every night?"

In true Rodriguez fashion, however, he's attacked the disease like the great coach that he is.

He has detailed a game plan that includes three days a week at Ascent Adaptation & Regeneration, a facility in Orange County that has helped hundreds of athletes rapidly adapt and heal from mental and physical challenges. They've also been recognized for their regenerative technologies.

"I obviously looked up what the prognosis was and the disease and it was a little terrifying to me, because, you know, we never promise anything ever," said Ascent President and CEO Heather Hiniker. "What we always talk about is the human body, and how God created us to be able to regenerate and self-heal."

When Rodriguez arrived at Ascent, most of the 12 so-called "circuit breakers" in his system were not working, but that has changed.

"He had seven of those circuits turned off and now, he's only got two," said Danielle Palmer, a certified nuclear medicine technologist at Ascent. There are only 70 CVAC machines in the world and Rodriguez will spend hours in one of them at Ascent.

"In essence, it's taking you up and down in altitude. The higher you go in altitude, the less oxygen molecules there are, and so your body innately knows it needs to produce more red blood cells," explained Hiniker.

After his initial diagnosis, Rodriguez actually stopped at a church for a three-hour cry.

Since then, it's been game on.

"He really just turned a switch mentally and started talking about, you know, how, 'I think I have this for a reason,'" said his wife. "'I think I have a greater purpose.'"

"From the minute we wake up, she senses my cue, and she knows she's got to go into that overload positivity mode that day," said Rodriguez.

"Every day I wake up, it's not just me that wants to do this; it's the army that's behind me," said Rodriguez. "I'm the one. I'm the one with ALS. Obviously, I'd much rather not have met you guys but it's an opportunity in itself that we've got to attack head on."

A booster club at Mater Dei donated a full month's worth of treatment to Rodriguez.

Meanwhile, a GoFundMe has been created to help him and his family.