Like any proud parent and husband, my office is filled with photos of my family.
And there is another picture I see daily, that of a 3-year-old who probably doesn’t even know who I am. His grandfather gave it me a year ago as a token of appreciation for helping promote Coach To Cure MD.
More on that shortly.
Jax Madrigal of Granbury is a hero, and he doesn’t even know it. Heck, he might not even know what a hero is.
He’s not a sports phenomenon like a young Tiger Woods. Sadly, unless something changes in the next few years, he won’t even have the chance to achieve athletic success as an adult.
Jax has Duchenne Muscular Dystrophy. It is a progressive condition that will take a youngster’s ability to walk before he is a teenager, take away the ability to move his arms, and eventually to even breathe on his own.
And, it will finally stop the heart from beating.
All of this happens before patients reach their mid-20s. And it is 100 percent fatal.
Jax is my hero because he reminds me that every moment in life is to be enjoyed. So what if a light bill gets paid a few days late, or an appointment has to be rescheduled?
Jax has no great understanding of what lies ahead for him. It’s clear from the smile on his face that he, like all children, think his teenage days are a million years away.
Jax has also become a hero to the Granbury Pirate coaching staff, who met him last year when they held Coach To Cure MD. The heart of those big, tough football coaches melted like a pad of butter in mid-August when they saw those bright eyes and dazzling smile.
I know exactly how they feel. I do the same every day.
The Pirate coaches will once again participate in the Coach To Cure MD program this season. This is a partnership between the American Football Coaches Association and Parent Project Muscular Dystrophy, the latter the largest national charity devoted exclusively to Duchenne MD.
The national effort is still somewhat in its infancy, but it has raised more than $1 million to help in the fight against the disease. It is, however, nowhere close enough to find a cure – and hopefully one exists for this cruel killer disease.
His grandfather, Steve Grossman, also of Granbury, is among those working tirelessly with the Coach To Cure MD program.
“I still hope and pray that someday Jax might possibly have an opportunity and ability to play a sport,” said Grossman. “But in all reality, Jax and the boys like him, who face an opponent much tougher than a football team, will not have that opportunity.”
The Pirates will hold their Coach To Cure MD event during their game Friday, when Southwest comes to town. Jax will attend the pre-game pep rally and team dinner.
“We also have plans to pass our information about Duchenne and how fans can help,” said Grossman.
This information will be given to fans upon entering the game. DO NOT throw it in the trash, please. Whether it’s $1 or $1,000, it’s all a step closer to the possibility that Jax might someday be playing for the Pirates himself.
Grossman said he has been reaching out to some ex-Dallas Cowboys in hopes of them making an appearance that night.
“So far it’s not looking like that will happen, but I won’t give up until the last minute,” he said.
Also, Jax’s family and many others across this nation aren’t giving up on finding a cure for Jax and other youngsters like him.
Head coach Scotty Pugh and his staff will be wearing patches on their sleeves, along with bracelets, to raise awareness of Duchenne MD. Grossman said he also hopes that at halftime a PSA video from Texas Longhorns coach Mack Brown will encourage fans to donate $5 on their next mobile phone bill by texting CURE to 90999 or by going online to www.endduchenne.com/goto/jax.
Come to think of it, we can also do that now.
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Category: Sports Archived