By Aimee Berg
Evan Cousineau would be 26 years old this November. By now, he might have been a college swimmer, a hockey player, or maybe even an Olympic water polo player like one of his 10-and-under teammates in Southern California. That is, if a rare genetic disease hadn't cut short his life in 2007, one day before his 10
th birthday.
On April 30, 2007, Evan had a major seizure at swim practice. His twin sister, at age 9, helped him out of the pool. He was rushed to the hospital. An MRI and blood test quickly revealed that Evan had advanced adrenoleukodystrophy (ALD) which damages the sheath that insulates nerve fibers so the brain can't communicate effectively with the body. It affects 1 in about 17,000 males and it's caused by a mutation in a gene on the X chromosome. The 1992 film "Lorenzo's Oil" starring Susan Sarandon and Nick Nolte effectively captures the progression of the disease.
"Once it starts, it's like a fire burning," said his mother, Gina. "They gave him six to 12 months to live and that it would be a horrific death."
In hindsight, there had been signs. One month earlier, Evan had what everyone though was a migraine "which was really a seizure," according to Gina. His handwriting had gotten worse. He couldn't sit still, leading teachers to suspect ADD. He was in third grade. The family didn't expect the shocking diagnosis. They had never heard of the disease.
But Evan loved water polo, so he kept practicing with his club, Saddleback El Toro (SET), until he couldn't play anymore.
Early that May, Cousineau was named First Team All-Tournament at the 2007 San Diego Cup. Three weeks later, "he couldn't figure out where to line up in the pool" at another tournament, said his father, Mark. "In that short period of time, he had lost that much of his cognitive ability." It's that fast.
Although the physical damage couldn't be fixed, doctors hoped that a cord-blood or bone marrow transplant might slow ALD's progress. But none of Evan's siblings matched: not Mary, who was a redshirt freshman on the USC water polo team at the time, not Derek, then 12 – not even Evan's twin sister, Alaina (a future USC player). But there were two little girls on the cord-blood registry who matched, so on June 27, Evan had a transplant at the University of Minnesota Children's Hospital in Minneapolis.
Mark, an environmental consultant and water polo announcer, stayed in San Clemente, California, with the two younger kids and visited frequently. Mary stopped out of USC to be with Evan in Minnesota. Gina, a nutritionist, also stayed by Evan's side in Minneapolis during what would become a five-month odyssey.
Thirty days after the transplant, Evan's cord-blood was fully engrafted, and when Evan's platelet numbers finally started to improve, "we were jumping for joy," said his mom.
Back home, the water polo community was rallying right beside them. Parents used their connections to set up a benefit featuring comedian Jeff Dunham and a silent auction that raised $35,000 to help defray medical expenses.
But then, Evan contracted a high fever in August. It was adenovirus, a respiratory illness that, given his compromised immune system, made Evan's fight infinitely harder. Until it was impossible.
On November 2, 2007, Evan passed away at the hospital. "We were all there" Gina said. "It was beautiful and horrific. The next day, "we flew home without him" on his and Alaina's birthday.
Brad Schumacher had been keeping up with the situation from the beginning. The two-time Olympic swimming gold medalist and 2000 Olympian in water polo knew the Cousineau kids from SET and had taught Evan and Alaina swimming skills when they were little.
"Knowing Gina – she's very motivated. I knew she would do something to keep Evan's legacy alive and help get more folks in the [donor] database so we could save little kids' lives in this scenario – or anyone's life," Schumacher said.
In 2008, when the Cousineaus set up the "Be a Hero Become a Donor" foundation to educate people about ALD and provide opportunities to donate marrow, blood, organs and tissue, Schumacher and SET joined forces with the fledgling 501(c)(3).
"We made a tournament called the Cousineau Cup, and it's become part of the fabric of the water polo community," Schumacher explained.
In its inaugural year, 2008, cheek swabs were performed on-site for potential donors. Schumacher himself got swabbed. Five years later, the Olympian learned he was a match for someone in Poland. He immediately agreed to donate stem cells through a blood collection procedure. Similarly, OJ Vazquez, the current 14-and-under boys' coach at SET, got swabbed at the Cousineau Cup and received not just one call – but three – saying he was a match. Twice, the collections were called off. (He was told they were no longer needed.) But in 2012, Vazquez successfully donated bone marrow from his hip in a process that took less than a day.
To date, Gina says the foundation has brought "well over 100,000 people to the registry" – one-fourth of those likely from the Cousineau Cup.
In addition, the foundation has raised $400,000 – three-quarters of it from the Cousineau Cup since its inception. The largest percentage has gone to the Be the Match National Donor Registry, another $100,000 to the University of Minnesota, $100,000 to DKMS (an international donor center), and $50,000 to families in need.
On an even grander scale, Gina and two other ALD mothers were instrumental in getting California to mandate ALD screening for newborn babies. The legislation was signed in 2014; it took effect in February 2016.
This year will mark the 15
th running of the Cousineau Cup. It will be held October 7-8, at the Woollett Aquatics Center in Irvine, California. Last year, there were 15 divisions (differentiated by age, sex, and skill level) and about 20 pools in Southern California hosted games.
Gina said there won't be swabbing on-site this time, but the event is still a huge draw for players. No. 1. It's for a good cause. All the proceeds minus the tournament's operating costs will go to the foundation. And No. 2, according to Mark, "it's very good competition."
So Evan's legacy remains as strong, bright, and as vibrant as ever.
It's only fitting, said 2016 US Olympic goalie McQuin Baron, who was Evan's 10-and-under teammate at SOCAL.
"Evan and I were the two youngest on [that U-10] team," Baron recalled, "and he was always the one with the biggest smile. He brought an energy to every single practice that made it more fun. You know when you sit with someone and they bring the whole room's energy up? That's exactly what Evan did on a pool deck. And in water polo, that's what gets you hooked. Those friendships and bonds that you form at such a young age take you through the rest of your career."
"Unfortunately, I never got to develop the relationship with Evan because of his passing," Baron said. "But throughout college, I always had Evan's initials on my water polo cap," next to another dear friend's, a high school and college teammate who died in 2014. "So I had both my angels in the cage in every game I played with USC."
"It's obviously a tragic loss of a child, "Schumacher said, remembering the 8-year-old attacker he once knew. "There's no way to understand that. But Gina's put her energy behind making a difference. To me, that work ethic to keep moving forward despite the loss is just incredible. It's a special, special family for sure."
If you are interested in learning more about the donation process and ways you can help, please visit: https://bahbad.org/become-a-donor/
This article originally appeared in the Summer 2023 issue of SkipShot magazine
