Climbing 'Jacob's Ladder' -- Couple Crusades to Save Their Son

Andrew Trossman and Marcy White were watching a few little mice very intently.

"We are counting on them, and Jacob is counting on them," Trossman said.

Jacob is the Toronto couple's 4-year-old son, and since birth he lived with strange symptoms that no one seemed able to identify. Instead of crying, he shrieked like a donkey, and his eyes would twitch uncontrollably.

It was only through an extraordinary coincidence that Trossman and White were set on the path to discovering that their son suffered from a rare genetic brain disorder, and that he had, at most, 20 years left to live.

What followed is straight out of the film "Lorenzo's Oil." Trossman and White were not experts in biomedical engineering, but the doctors they consulted seemed to have given up, so they set out themselves to find a treatment for whatever it was that ailed their son. And just this month, promising results from those very important mice led them to believe they might have had a breakthrough.

The Child Who Could Not Cry

From the first days after Jacob's birth, it was clear he would not have an ordinary life.

"The only thing that really, really still stands in my mind is just hearing somebody say, 'I've never seen this before,'" White recalled. "There is this little baby … with tubes [in] him, in the first, what is it, half hour of his life."

Jacob never cried like a normal baby cries. Not once, because he couldn't. His sound was something else.

"They call it a strider, but it kind of sounds like a donkey," Trossman said. "A very striking sound."

Both of Jacob's vocal cords were paralyzed. He was in and out of hospitals, and for 10 months, doctors could not diagnose what was wrong.

"He just had everybody stumped," White said.

White and Trossman said no one was willing to try to solve Jacob's problem, and they were told they would never know -- an "unacceptable" possibility, they said.

"We had to find out what was wrong," Trossman said. "Because if you don't know what is wrong, you can't fix it."

Earning a 'Ph.D. in Jacob'

So, White and Trossman began trying to figure it out themselves, reading everything they could find. They talked to any expert who would listen, until, in a way, they became the experts. White even audited medical classes at the University of Toronto. She and Trossman said they've earned an unofficial degree -- they call it a "Ph.D. in Jacob."

After months of research, finally a break: White uncovered that her family had a history of childhood illness going back generations. She dug up medical records of her mother's brothers -- uncles she had never met because both died before their second birthday.

"I got shivers when I saw it," she recalled. "It talked about paralyzed vocal cords … recurrent vomiting, nostagnis, which is when the eyeballs shake. … It was a perfect match."

But the clincher was an article buried in a medical journal from almost 25 years ago. It described in great detail cases similar to Jacob's.

"They handed me an article and said, 'You know, we came across this article, we think it is about your family,'" said White.

Of course, White thought "your family" meant a family like hers; but in fact, the family was hers.

"We actually saw there was a family tree, and there is White and that was just unbelievable," Trossman said.

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