Gem of an Idea to Fight Usher Syndrome

Sometimes when two people get together for a common goal, the result can be something beautiful.

That has been the case with Si “Lam” Huynh, the owner of in Arcadia, and Sonia Desormeaux of La Cañada, the former wife of Kentucky Derby winning jockey Kent Desormeaux.

Sonia, who formerly lived in Arcadia and Bradbury, has been a customer of Prince Jewelers for some 20 years. Last September she invited Huynh, who is better known simply as Lam, to a fundraising event at her home to benefit the Eye on Jacob Foundation, which she founded.

It is the first and only nonprofit organization dedicated to funding research for the treatment of Usher Syndrome, a rare disease that causes degenerative hearing and vision loss.

The younger of the two Desormeaux boys, Jacob, 12, suffers from the disease.

At the fundraiser, Lam asked Sonia what he could do to help raise money for her foundation. The idea they came up with was a line of jewelry that honors mothers. Lam would design the jewelry, Sonia would promote it, and a portion of the proceeds would go to the Eye on Jacob Foundation.

So far so good.

Sonia initially did a photo shoot with a three-month-old baby who is the son of a Prince Jeweler's customer. More recently, Sonia did a 30-second commercial with a friend’s daughter that is, for now, only playing at a La Cañada theater and on Facebook, YouTube and the Prince Jewelers and Eye On Jacob websites.

“A lot of my friends here in La Cañada have seen the commercial at the theater and have teased me about it,” Sonia said.

That the commercial does not yet have widespread coverage is OK. As long as it is working to draw attention to her foundation and the line of the Mom’s jewelry line, which, as Sonia notes, “is beautiful." She is well aware that if the jewelry sells as well as expected, her foundation will benefit.

The plan is for the commercial, which features a specially designed Mom’s pendant, a ring and a bracelet, to become more widespread as Mother’s Day, May 8, approaches.

I had met Sonia once before–in the Winners’ Circle at Churchill Downs in May of 2008. Kent had just won the Kentucky Derby aboard Big Brown. Jacob and his brother, Josh, now 18, were also there.  I was covering the race for the Los Angeles Times, my former employer.

It should be noted that I too am a longtime customer of Prince Jewelers. About a year-and-a-half ago, I introduced Lam to Los Angeles Lakers Coach Phil Jackson and his girlfriend, Lakers executive Jeanie Buss, who is also owner Jerry Buss’ daughter.

Lam made cufflinks for Phil and a pendant for Jeanie.

After that, Lam, as a friend, asked me to help him promote his business. As I explained to Sonia, it is a non-playing job.

“So is mine,” she said with a laugh.

Sonia devotes a lot of her time gratis as she travels around the country raising money for her foundation.

"Funding research of Usher would cure so many other diseases also," she says. "It is amazing, there is little being done out there about it at all…If they can find out [how] to cure Usher Syndrome it would literally change the lives of millions of people."

The Desormeauxs have been able to give Jacob the best medical care money can buy, Sonia acknowledged, and her goal is to make those same resources available to everyone. The cost for testing for Usher Syndrome was $1,800 six years ago, Sonia said. That number has been reduced to $187 thanks largely to donations.

Lately, Sonia has been working with Dr. William Kimberling, a professor of ophthalmology at the University of Iowa and a leading scientist in the battle against Usher Syndrome, on the opening of a Jacob Deaf/Blind Research Center at the school in Iowa City.  

Jacob is unable to see at night, and his peripheral day vision has begun to diminish. Without a cure, he will be blind by adulthood. However, with the help of cochlear implants, he can now hear most sounds.

“Without the implants, he hears nothing,” Sonia said.

Coupled with lots of lip reading, he can carry on a normal conversation. He is currently in the fifth grade at La Cañada Elementary School, where he has endeared himself to teachers and classmates alike.

"He is a young man who lights up every room he enters," fourth-grade teacher Laurie Hopkins told the Chicago Tribune last year. "In the classroom he is enthusiastic. He has a zest for all he undertakes."

To find out more about the "Mom" collection, visit princejewelers.com.