Joaquin Aluffi was just shy of his fifth birthday when he had a major allergic reaction playing in the grass.
His lungs shut down and his throat swelled and he was rushed to the emergency room. After doing tests and finding hugely high protein counts later at Stanford, doctors found he had Duchenne’s Muscular Dystrophy, a terminal disease with a life expectancy of 16-24 years old.
A happy, sports-minded, adventurous kid, Joaquin began to be robbed by the disease of his ability to walk and ride a bike. Over time for its victims, the disease strips their ability to smile or wave a hand.
But it hasn’t robbed him of his spirit, said his mom, Sara, 44, who manages the Paradise Grill in Capitola and used to manage the Crow’s Nest.
“He’s an optimistic, funny, 10-year-old now and he’s never lost his sense of humor,” she said. “He’s just a champ. He has to take a daily regimen of steroids and it changes your whole look. He doesn’t look like he does in the picture. It’s more tough for the parents than for him.”
The community has been powerfully helpful, raising more than $250,000 for the family’s expenses, and enough so that she is helping other families buy ramps for wheelchairs in their homes and cars and other necessities. Their website is joaquinswarriors.com
Sara and his father Chris are lifelong Santa Cruzans, as are their parents and grandparents, which has created a network of support for them that she’s so thankful for.
“People are insanely generous in this community,” she said. “We’re trying to help with things for basic care as well as for a cure. It’s a labor of love to give back when our hands are tied. We are stuck in regards to our child, but we see what we can do for other children.”
Joaquin, who is in a motorized wheelchair, plays at Leo’s Haven, the county’s first park for kids of all abilities. He plays in a baseball board game league with one of the kids and attends Westlake Elementary School.
“He’s such a sports lover,” Sara said. “I wish he was a TV lover or a video game lover.”
Despite his problems, Joaquin has something valuable to give to other kids, she said.
“He has taught so many kids about appreciating the basic things they are given, like the ability to go to a bounce house or walk on the beach.”
Please visit www.joaquinswarriors.com
By Brad Kava