When Jacob Trossman emerged from his mother\'s womb, his chest caved in as he drew his first breath. Doctors who resuscitated him were baffled. His anguished parents were told a diagnosis might never be made. As doctors searched for a diagnosis, the Toronto boy\'s parents began an exhaustive, parallel journey for a cure, reminiscent of the Oscar-nominated movie Lorenzo\'s Oil. In that 1992 film, a boy\'s disease is so rare that no one is working on a cure, so his parents vow to find one themselves. Then one day, a test that was thrown in with a slew of others gave them the answer: he had Pelizaeus-Merzbacher disease (PMD). The rare central nervous system disorder is caused by the lack of myelin; a fatty covering that acts as an insulator on nerve fibres in the brain. While Lorenzo\'s parents were battling the medical establishment, Mr. Trossman, 38, and Ms. White, 37, are working with physicians. Of particular interest is a drug called HP184, a sodium and potassium channel blocker that has been tested on spinal cord patients. When Jacob\'s parents brought the drug, made by Sanofi-aventis, to the attention of doctors, none had heard of it. \"They\'re very proactive, they were actually the ones who first told me about HP184, I didn\'t know about it until then,\" Jim Garbern, associate professor of neurology at Wayne State University School of Medicine, said in a telephone interview from Detroit .