Bronx dad’s desperate plea for son, 2, with rare brain disorder

Alfred Santiago the third needs your help.

The 2-year-old was born with a rare congenital disorder where a part of his brain is shrinking over time.

His father, Alfred Santiago Jr., who works and lives part-time in the Bronx, has found a California doctor who will perform a stem-cell surgery on the child in the Dominican Republic at a cost of $30,000. But he doesn’t have nearly enough money to pay for the procedure.

Santiago said he knows it is currently illegal to conduct stem cell surgeries in the U.S., and that is why he signed off on having the operation done on the Caribbean island.

“I’ll sell hot dogs in the street if I have to,” said the boy’s father. “I’m not going to stop until I get this surgery for my son.”

Little Alfred, who lives in Westchester County with his mother, Yesenia Cruz, has a rare condition known as OPCA, or olivopontocerebellar atrophy, in which a portion of the brain known as the cerebellum gets smaller over time.

The disease takes a terrible toll. Most patients experience difficulty with balance and coordination, muscle spasms, numbness in the extremities and loss of thinking and memory skills.

“Alfred is a very sick little child,” said his pediatrician, Barbara Coven. “It’s hard to watch him get progressively worse over time.”

The California-based doctor, William Rader, does a procedure where human fetal stem cells are injected into the patient. According to his Web site, the stem cells search “out, detect and then attempt to repair any damage or deficiency discovered.”

Rader could not be reached for comment. On his Web site, he says he has helped people with spinal cord injuries and such devastating diseases as epilepsy and Down syndrome.

“No one knows how this came about in Alfred,” said his father. “He started showing symptoms when he was about 1 year old.”

Little Alfred wakes up in the middle of the night screaming in pain, his father said.

“I rarely get a full night’s sleep,” said the father. “To this day I’m not the same person I was when he was a baby. I have to look at my son every day knowing he will be disabled because of a very rare brain disease and no one knows how it came about.”

Santiago is an assistant grocery manager at a Super Stop & Shop in the Bronx.

The insurance industry does not cover the cost of human fetal stem cell procedures. To help, send checks to Alfred Santiago 3rd, 45 Traverse Ave., Apt. 1G, Port Chester, N.Y., 10573.

© 2009 Daily News, L.P. All rights reserved.