Sunday, February 21, 1999
By William Dauber
Staff Writer
WHITTIER -- Ingrid Suarez said the first milestone she noted in her baby's book was his "cooing" sounds. The last item she wrote down was that little RJ rolled onto his back from his stomach. Months passed without a new journal entry and Suarez knew something was wrong with her son.
"I had a feeling that he might not be a normal child, or that doctors would tell me that he might never walk," Suarez said. "I never expected them to tell me there was no cure for what he had and that he was going to die. That just killed me."
The Suarezes, who live in Whittier, were told late last month that their 1-year-old son, Ruben Suarez Jr., or "RJ," has Tay-Sachs disease. It is a genetic disease for which there is no cure. The disease is passed onto the child through a gene mostly found in the Jewish community; Jewish women are routinely checked for the disease during pregnancy. But it's not as prevalent among Latino women like Ingrid Suarez. About one in every 3,500 babies is born with the disease annually in the United States.
"Babies with this disease are usually aborted because they don't live," said Dr. Victoria Arcadi, who is now treating RJ.
"RJ slipped through the cracks because, according to the medical text books, Tay-Sachs is not supposed to happen to anybody who is Hispanic."
Arcadi said that babies with Tay-Sachs usually live between three and five years. She said the disease is characterized by a fatty material on brain nerves that prevents the nerves from communicating with the rest of the body. As the disease progresses, there's a loss of sight and hearing. Muscles stop functioning, the throat forgets how to swallow and the head swells.
"I believe the babies are in a lot of pain," Arcadi said. "Our hope is that we make RJ's life more comfortable."
When RJ's father, Ruben Suarez, was told that doctors could not help his son he did not believe it. He made calls to Israel and checked the Internet for help. That's where he found Arcadi, who is a chiropractor and had some success treating a Japanese baby who had the same disease.
Suarez said that before Arcadi's treatments, RJ's eyes would roll back when they were exposed to light. At 9 months, he could not sit up alone. He said with the treatments RJ's eyes follow him across the room and he's kicking his feet. Arcadi explains that through cranial adjustments and food supplements called glynutrients, RJ is improving.
"He's been improving in a short time," Arcadi said. "This usually doesn't happen; people usually get worse. We are just hoping his quality of life will be good. We are hoping for a good outcome, but not counting on it."
Ruben Suarez recently lost his father to AIDS. He's not sure what to do for his first child and he is left with a sense of helplessness.
"There are nights were my wife and I cry ourselves to sleep," he said. "And sometimes I think this whole thing is a dream. I wish I could sleep all day and wake up and RJ's disease would be gone."
The Suarezes said they are thankful to Arcadi for her help, and for relatives and friends and baby sitter Bertha Garcia for watching over RJ while his parents work. But one of their goals is to have his mom stay home with him and for RJ to be cured.
"Our hope is for RJ to live," Ruben Suarez said. "We are hoping for a miracle this is our first child."
The couple, along with help from friends and relatives, will hold a fund-raiser to help Ingrid stay home with RJ to help him through his pain. The Suarezes will also donate a portion of the money for Tay-Sachs research.
The event will be held from 2 p.m. to 6 p.m. March 21 at the National Sports Bar and Grill in Covina.
Donations can be sent to the California Credit Union. P.O. Box 60085, Industry, Calif., 91716-0085. Check should be made out to Ruben Suarez Jr.