Saturday, March 2, 2024

Jax Madrigal meets his hero

Posted

Sometimes wishes really do come true. A wish came true for 13-year-old Jax Madrigal of Granbury when he recently met his football idol. 

Jax, who was diagnosed with Duchenne Muscular Dystrophy at 2 years old, made a wish through the Make-A-Wish Foundation to meet Tom Brady.

Duchenne Muscular Dystrophy is a muscle-wasting disease. According to Duchenne.com Duchenne muscular dystrophy is a rare, genetic condition characterized by progressive muscle damage and weakness.

The site goes on to say, “Sometimes shortened to DMD or Duchenne, this rare disease is caused by a genetic mutation that prevents the body from producing a protein called dystrophin. Dystrophin acts like a shock absorber when muscles contract. Without dystrophin, muscles become more and more damaged and weakened. They may also lose the ability to repair themselves after an injury. Over time, children with Duchenne will develop problems walking and breathing.”

Duchenne is an irreversible and progressive disease. There is no known cure, though there have been advancements in managing the disease. Duchenne rarely affects females — just one in about 50 million female births has Duchenne. The occurrence in males is one in 3,500 to 5,000.

Typically, children are 5 or 6 years old when diagnosed. Jax’s grandmother became concerned when he did not walk until 17 months old. The Madrigals then sought answers about Jax’s delayed walking.

Jax’s blood was tested for levels of the enzyme creatine kinase which is found in the heart, tissue and skeletal muscles. Jax’s results showed very high levels of creatine kinase in the blood, indicating extreme muscle loss. The CK level should be 200 units per liter (U/L) or less, but Jax’s was 27,000 U/L. Incredulous, Jax’s parents, Dustin and Ashlee Madrigal, asked for a retest — the next test showed 31,000 U/L. The Madrigals received the official diagnosis for Jax the day after their other son Jace was born. 

A sports fanatic, Jax is a natural athlete and a numbers whiz. Just a few years ago, before his illness was more apparent, he could throw a football in a perfect middle-of-the-chest spiral. Jax has scores of sports stats memorized — stats of professional football players, stats of professional baseball players and even some college and soccer stats. 

The Madrigals wanted Jax to wait to make his wish until they knew it would be a memory he would treasure. They wanted him to make a wish he would be sure of — something that wasn’t just a temporary whim. “We wanted to wait until Jax was older. We knew we had time, so that he could make a good choice,” offered Ashlee Madrigal. 

Sports of one kind or another are “constantly” on their television at home, according to the Madrigals. Jax’s little brother Jace, age 11, likes the Raiders of the NFL, Texas Tech and Oregon where college ball is concerned. Mom Ashlee is the sole Dallas Cowboys fan. “They are so mean to me (about the Cowboys)!” she quips. And Jax, naturally, follows Tom Brady. His blanket is the Tampa Bay Buccaneers, and his favorite college team is Baylor.

Jax is a familiar face to Pirates fans, since he has been the honorary captain of the Granbury Pirates football team for 11 years through the Coach to Cure event. The event is a partnership between Parent Project Muscular Dystrophy and local school districts which brings awareness to and raises funds for Muscular Dystrophy. The Coach to Cure event is one of the ways the Madrigals have become active in awareness.

Jax attends the Granbury High School pep rallies for Coach to Cure, where he acts as honorary football team captain. The coaches share about Jax and the struggles of his disability, and Jax does the coin toss at the varsity game.

As the manager of the Acton Middle School 7th grade football team, Jax remains involved in sports. Jax and Jace are each other's biggest fans in every area of life, cheering each other on through victory and hardship. 

Through the progression of the disease, Jax has participated in drug trials, and each time the family hopes for a slowing of progression of the disease. Qualifying for drug trials can be complicated as pharmaceutical companies are very specific in their qualifications. For one trial, Jax walked too well to be considered.

For one of the trials, the patient needed to be ambulatory if under age 7 and non-ambulatory if over age 7. By the time Jax was considered he was over age 7 and still ambulatory. Jax currently uses a scooter to travel long distances. Early next year he will be fitted for a wheelchair.

In 2022, between May and December, the Madrigals flew to Arkansas every two weeks so Jax could receive infusions, until finally a home health nurse was set up to continue the infusions.

A new trial begins in December. The Madrigals are hopeful Jax will qualify. Gene therapy is Jax’s best hope for delaying the progress of the disease. It was when visiting a clinic that the Madrigals were encouraged to pursue Make-A-Wish for Jax.

The Madrigals originally began the process of submitting Jax’s wish to the Make-A-Wish Foundation several years ago. “We began the process in 2019, but then it was COVID, you can’t fly, etc., then everything fell to the wayside,” shared Ashlee. 

The wish was revived at a clinic appointment earlier this year. There they saw a sign that said to let the staff know if they wanted to speak to a social worker about Make-A-Wish. This prompted the family to revisit the idea.

In the few years since he originally conceived of meeting Tom Brady, Jax’s wish has not changed. “Meet Tom Brady” still tops the list for Jax. 

Official word that Jax had been chosen for Make-A-Wish came this summer with a phone call. The selection was supposed to be kept a surprise for Jax and plans were underway to send out a film crew for the moment Jax opened the package, but the package didn’t arrive even a week before the event. 

Eventually they traced the package to an old address and the current resident. “It was such a God thing,” said Ashlee, when the package was found at the address of a local woman who owns a company that places differently-abled people in jobs. 

When Jax finally opened the package, it contained a football. The message in the package read, “Heard you are a stats guy. Chances of meeting Tom Brady — 100%.”

A company called Fanatics — a leader in the digital sports platform — has partnered with Make-A-Wish to make all the sports-related wishes come true. Fanatics flew the Madrigals to New York on Sunday, Oct. 22 to begin the royal treatment.

Monday was a sightseeing day for the Madrigal family as they took in tourist sites. “Jax was really into it, especially the 911 memorial,” offered Ashlee.

Tuesday, Oct. 24, was the day Jax and family got to meet Tom Brady, and just as importantly, it was the day Tom Brady got to meet Jax, his family and the other families who attended. There were nine families whose children have various health challenges. Four of the Make-A-Wish participants were there to meet athletes Aaron Judge or Jason Tatum. 

The event treated each child like a professional athlete with their own trading card and contracts for each one. Their trading cards were shown on the “Jumbotron.” After a lavish breakfast, each child got to have 15 to 20 minutes of one-on-one time with their chosen athlete. Directly following the meeting, the children attended stations with the athletes where they got to play catch with Brady, basketball with Jason Tatum or baseball with Aaron Judge. 

Joy abounded among the Madrigals recalling the event. “Walking down the tunnel to meet Tom and seeing Jax’s smile and watching his dream come true was amazing,” recalled Dustin. 

“Oh my gosh! It was incredible! Incredible! After we left the locker room Jax said, ‘Mom, my cheeks hurt, I can’t stop smiling!’ I said, ‘Me too, Bud!’ And Jace was just so genuinely happy for him,” Ashlee said.

“Believe in your dreams! And Tom Brady should do more Make-A-Wishes!” Jace exclaimed.

Ashlee shared, “Tom Brady made you feel special, like it was about you,” adding that Jax was overwhelmed by the experience. “I don’t know what to say. It was more than I expected. It was so awesome!”