SANTA MONICA (CBSLA.com) — Hundreds of people walked to raise awareness about Williams Syndrome Saturday in Santa Monica.
It’s an annual walk but this year organizers also chose to honor someone who was unable to participate — 8-year-old Jonathan Martinez.
The young boy was gunned down in the elementary school shooting in San Bernardino. And he had Williams Syndrome, a rare genetic disorder that affects one in 10,000 children.
“We lost a member of our family,” said Terry Monkaba of the Williams Syndrome Association.
“By asking that Jonathan’s legacy be increased awareness for Williams Syndrome they helped every one of us, every and one of our children,” said Monkaba.
The they she was referring to, Martinez’ parents. The crowd also honored them for speaking up and out for the disorder. They were brought to tears by the gesture.
“Thanks to all the prayers we’re still standing,” said Alfredo Martinez, Jonathan’s dad.
Alfredo and Florina Martinez are not ready to talk about the crime that took their son’s life but they want the world to know more about the disorder that shaped his life.
“They hug you and kiss you and tell you ‘I love you for everything’. There’s a joy. It’s like winning the lottery when you have one of those kids in your family,” said Karina Martinez, Jonathan’s aunt.
A sentiment echoed by many parents in the crowd.
“My son Cameron is the best. He’s amazing He’s got love for everybody. He smiles, he laughs — happiest kid you’ve ever met.” said dad Curtis Short.
Many children with Williams Syndrome have cardiac issues and learning disabilities.
Their families are looking for acceptance.
“You see a kid with Williams Syndrome, go shake his hand and say hello,” said Short.
That understanding can only come through education.
“To love them and to understand them,” said Karina.
As the Martinez family finds the strength to move forward, they hope Jonathan’s death will help other kids like him, live.