A race against time

La Cañada mom launches fundraising, research campaign in effort to cure son's vision loss.

September 17, 2010|By Megan O'Neil,
(Raul Roa Valley…)

The blows came one after another. First doctors told Sonia Desormeaux that her son, Jacob, had serious kidney problems. Then they determined he was profoundly deaf and had a severe balance disorder that delayed his ability to walk.

There were frequent bumps and falls — Jacob was always black and blue with bruises. His parents constructed a helmet in order to protect his head.

"When he was a baby I would literally walk around with both arms around him, shielding him from everything," Sonia said. "If there was a corner, the center of his forehead would find it."

Sonia shepherded him from one specialist to another, and cared for him through surgery after surgery. But it wasn't until 2006, when then-7-year-old Jacob began to experience vision loss, that a doctor at New York University was able to link the complicated symptoms. He told Sonia that her son was going blind, and sent her home to look up Usher Syndrome, a rare disease characterized by degenerative hearing and vision loss.


"I get home, and I look on the computer and I read my son's biography," Sonia said. "For the first time in my life everything makes sense and I don't feel like I am completely crazy."

The diagnosis was both a source of relief and frustration. The Desormeauxs finally had a name for Jacob's health problems, but were dismayed by the lack of research and information on Usher Syndrome. In a race against time, Sonia began seeking out every scientist who had ever written about the disease.

Almost simultaneously, the Desormeauxs were shuttling between New York, Florida and Kentucky as Jacob's father, superstar jockey Kent Desormeaux, pursued the Triple Crown. In 2008, as the Kentucky Derby approached, the media caught wind of Jacob's condition and the family was caught up in a flurry of scrutiny. (Riding Big Brown, Kent went on to win the Kentucky Derby and the Preakness Stakes, but fell short at Belmont.)

Sonia remained focused on her son, harnessing the attention to launch Eye on Jacob, the first and only non-profit organization dedicated to supporting research for the treatment of Usher Syndrome. On Saturday, Sept. 25, the foundation will host its second major fundraising event, a dinner at the Desormeaux residence in La Cañada Flintridge. Tickets are available via e-mail at

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