MURRIETA (CBS 8) - The parents of a terminally ill child in Riverside County say their son's life could have been changed with a $1 test, which could have been done at birth.
But the test for Krabbe disease isn't part of the newborn screening given to all babies in California.
Nicole and Steve Aldrian say they didn't have any reason to suspect anything was wrong when their fraternal twins were born in November 2008. Trevor and Tyler were happy, healthy babies.
Their dad says, "Of the two boys, Trevor was the first one to really blossom. He had these big eyes and this magical smile."
But Trevor soon began to have trouble eating.
"Trevor started to projectile vomit his milk," says his mother Nicole, "and it was very, very scary."
Trevor was treated for acid reflux, but his inability to hold down food and his irritability continued to get worse.
"He would just scream and scream and scream every time he saw the bottle," Nicole says.
Finally, the Aldrians turned to a neurologist at Rady Children's Hospital in San Diego, and at six-months-old Trevor was diagnosed with a rare genetic disorder called Krabbe disease. It is seen in an estimated one in 100,000 births. Kids who suffer from the terminal illness lack an enzyme needed to protect their nerve fibers.
"At some point, in the different stages, he will go blind, he will go deaf, and then, he'll just stop breathing," says Nicole.
"Basically, he loses all muscle control of his hands, his feet. All the muscles of his body don't work properly because it's a central nervous system disease," Steve adds.
Doctors believe the start of the degeneration process is extremely painful for children who suffer from Krabbe.
The disease is marked by non-stop crying. In Trevor's case, he cries 15 hours a day. His parents took heartbreaking home video of the little boy crying and screaming as a desperate plea to their insurance company to approve an in-home nurse to help them care for their inconsolable son.
"The suffering period was terrible and lasted for a period of about five to six months," Steve says. "And that was the hardest thing in the world, to see a child suffer like that."
But the Aldrians say what is most devastating for them is that Trevor's suffering could have been prevented.
It costs an estimated $1 per child to add Krabbe to the newborn screening test. California currently tests for 48 diseases, but Krabbe is not one of them.
"The awareness needs to be brought to California," the mother of twins says. "Are you telling me my child is not worth a dollar for a test?"
Steve sums it up: "It simply comes down to Trevor was born in the wrong state."
Right now, only New York screens for Krabbe, thanks to the efforts of NFL Hall of Famer and former Buffalo Bills quarterback Jim Kelly. Kelly's son Hunter died of the disease at the age of seven.
Doctors say detection at birth is critical. A cord blood transplant using a match from a public umbilical cord blood bank is effective only before symptoms arise.
Doctor Maria Escolar, a leading Krabbe specialist at the University of North Carolina, says she believes there will be a cure one day.
Dr. Escolar has been instrumental in helping Trevor's parents manage his disease. She believes there should be a universal newborn screening test so that babies in all states get the same chance at being treated immediately. She says it can drastically improve quality of life for children living with Krabbe, though they will likely still have severe motor disabilities.
"Because the outcome is not perfect, there's controversy involving newborn screening," Dr. Escolar says, "but it's such a horrible disease, even if the treatment's not perfect, the difference of kids treated and those who aren't is night and day."
The Aldrian twins are now 28 months old, and Trevor has beaten the odds.
"Most of these children don't make it to their second birthday and he's been thriving," Trevor's father says.
Steve and Nicole say they are committed to making Trevor as comfortable as possible during his time here on Earth.
Their son's legacy will live on through their charity, "Peace, Love and Trevor," which helps others afflicted by the disease.
"We don't know how long he will live, but he's already lived a full life in my view," Steve says. "He's touched so many people and loved by so many people and that's really what life's about."