Jonathan Martinez, the 10-year-old boy who was shot and killed at a school in San Bernardino, was born with a rare genetic disorder called Williams Syndrome. His parents have asked that he be honored by increased awareness to the condition.
Families gathered in Chatsworth Friday to share stories of their very special children.
"We were so excited to share our story but so sad at the same time because we know why it's being shared. The news is getting out because we lost a precious 10-year-old boy," Lori DeLeon said.
Like Martinez, Madison DeLeon was born with Williams Syndrome, a rare genetic birth defect that affects one in 10,000 people. People with Williams Syndrome can live long lives, but some die young from heart problems, which makes every day even more special
Madison DeLeon was misdiagnosed for months.
"Didn't roll over when she was supposed to ... or stand up like she was supposed to ... had extreme anxiety.. was super sensitive to sounds," Lori DeLeon said.
Children are born small, all under five pounds, and show early signs of development delays and heart problems.
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A genetics expert eventually suggested DeLeon has Williams syndrome, a condition her mother had never heard of, so she started researching.
"As soon as I went to the Williams Syndrome Association and saw the pictures of all the other kids, I broke down in tears because I knew that's exactly what it was," Lori DeLeon said.
Williams Syndrome is caused by a missing piece of genetic material from Chromosome 7, which results in unique facial features.
"She has a cute little button nose, a huge smile, small chin, and curly hair," Lori DeLeon said.
Madison DeLeon is now 10 years old and attends special education classes at a public school.
"When I first heard Williams Syndrome I was nervous because I want to be like a normal kids. I didn't understand why I had this," Madison DeLeon said.
"She is delayed. I try to see the positives ... it took a long time to walk. She didn't take a step until after 2. Now she can run and jump and play like all the rest of the kids," Lori DeLeon said.
Rachel Myers is also 10. She loves makeup, play dough and music.
DeLeon and Myers have become fast friends after their parents joined a nationwide networking group. They're dedicating an upcoming walk-a-thon fundraiser to Jonathan Martinez.
He was known for his infectious personality, a trait many children with Williams Syndrome display.
"The thing about Williams Syndrome ... they have this gregarious personalities ... everyone she meets is touched by her and she has this warm smile and talks to everyone. I think that's the neatest thing."
The reason is fascinating. Studies suggest kids with Williams Syndrome make increased levels of Oxytocin, the so-called "feel good" hormone.
"So, when they have a social interaction more oxytocin is released than is typical, so they have an emotional internal chemical reward almost for their sociability," Gina Myers said. "Rachel has global learning difficulties but she is just a joy to everyone she meets."
The open, loving nature of these kids is echoed in Jonathan Martinez' smile, reminding us we're all in this together.
"Her motto is there's no such thing as strangers-- only friends we haven't met yet. I think if we all felt that way, our world would be a different place," Lori DeLeon said.
The walk-a-thon in memory of Jonathan Martinez will take place May 20 in Santa Monica. If you'd like to learn more, visit the Williams Syndrome Association website.
