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"I didn't leave the house for two years after that," Gonella recalled. "It put the fear in me."
Sufferers sometimes exhibit signs of autism and speech impediments, as well as slower cognitive development, Malloy said.
Heartbroken, the family attended its first foundation conference when Mikey was still an infant, finding refuge and solace in families who were living with the disorder while seeming happy.
UCLA Medical Gucci Purse Men Center who diagnosed Mikey's condition, Gonella said.
Miller will join the Gonellas and a team of other Manhattan Beach residents along the 10K route. She's raised about $5,000, and the Gonellas have collected $37,000.
Compared with many nonprofits across the country, the foundation has fared decently in the sputtering economy, but smaller donations have kept the group from expanding services and programs, Malloy said.
Through the years, as Mikey progressed through school, Gonella worked closely with the foundation, even serving on its board of directors.
On Saturday, nearing the third anniversary of Mikey's death, Gonella and her husband, Roy, will give back to the group that helped them for so many years by running the Manhattan Beach 10K as a fundraiser for the foundation, while also raising awareness about the rare condition and honoring their son's memory.
One of Julie Gonella's darkest moments in raising a child with special needs came about 20 years ago, but the Manhattan Beach resident remembers it clear as day.
Leading the way for awareness at 10K race
Cornelia de Lange syndrome occurs in roughly one in every 10,000 births and is most often the result of a gene mutation, said Marie Malloy, the foundation's director of external affairs.
"It's been long enough that we didn't think we'd be so teary, and we wanted to do something meaningful for him," she said.
old really doesn't enjoy the activity all that much but the cause was too significant, and her personal milestone too meaningful to sit idle this year, she said.
Karen Miller, a Torrance resident, said connecting with the foundation and the Gonellas has been a lifesaver in raising a daughter, Nicole, who has CdLS.
Without much knowledge of the condition, doctors said Nicole would live two years at most, Miller said. She's now 16 and attends North High School in Torrance.
A doctor at Providence Little Company of Mary Medical Center connected the family with a geneticist at County Harbor
"It's been weird," she said. "I've had to get a new identity. I've always been Mikey's mom, his advocate, and I'm an expert of Cornelia de Lange syndrome, and when you don't have a kid with it anymore, that's a skill I have, but what do you do with it now?"
features like upturned noses, joined eyebrows and thin, downturned lips.
Manhattan Beach residents Roy and Julie Gonella hold a picture of their son Mikey, who died three years ago of Cornelia de Lange Syndrome. The couple will run the Manhattan Beach 10K in memory of their son. (Robert Casillas Staff Photographer)
But a guiding source of light in Gonella's darkness was the Cornelia de Lange Syndrome Foundation, an advocacy and support group whose members empowered her to educate others about Mikey's condition, and provided steadfast support throughout her son's short 18 year life.
As she walked along The Strand with her 2 year old son, his face characterized by delicate, elfin features brought on by a rare genetic condition called Cornelia de Lange syndrome, a stranger declared that little Mikey Gucci Backpack Men Cheap
must have done something awful in a previous life to look the way he did.
Since Mikey's death, the couple has stayed involved with the foundation by reaching out to other Southern California families who have children with the disorder and spreading word that a support system exists.
Advocates suspect about 20,000 people in the United States live with the syndrome undiagnosed, or are unaware that a support network exists, she added.
Gonella has never been a runner and, in truth, the 52 year
But after Mikey died in 2006, Gonella was left with a unique skill set that she wasn't sure how to utilize.
"This is the first time I've even run in my life, and I'm probably going to walk run it," Gonella said. "I hate it, but I feel this is so important."
The Avon, Conn. based foundation was formed by parents of affected children in 1981, about seven years before Mikey's birth in Torrance.
Nationwide, the foundation works with about 2,500 families. In California it has identified and worked with more than 200 people who have the Gucci Clutch Price
syndrome, Malloy said.
The condition ranges in severity, but can manifest physically through stomach abnormalities, missing limbs and diminutive stature, as well as distinctive facial Gucci Travel Bag Price
"Once we got in touch with the right people, they gave us more hope," Miller said. "It has just meant so much to us to have someone who knew what was happening. For me, the foundation was everything."
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