Claude
St-Jean 1952-2006 |
This
is the article published in the Globe and Mail after we all learned
about M.J
Stones
There is no effective treatment to the disease, which is inherited by about on child in 25,000 and begins to affect the heart and nerves around puberty. Sufferers eventually lose the ability to control even simple gestures, and can develop diabetes and foot deformities. Typically, Claude St-Jean enjoyed a totally normal childhood. "I was happy, carefree, enterprising, jovial and looking forward to a promising future," he wrote. "One evening, on my way home form my student job, I suddenly experienced a loss of equilibrium, causing me to stumble and walk unsteadily. Passerby, believing me to be drunk or stoned, began casting insults at me." Humiliated, Mr. St-Jean first attributed the attack to fatigue. But when the same thing happened a few days later, his parents took him to meet a top neurologist specialist who, after subjecting the teenager to a battery to tests, diagnosed Friedreich's ataxia. "You would think that I might have drawn some reassurance from knowing exactly what the problem was, " Mr. St-Jean recalled. "But the doctor informed me that it was a serious, progressive, genetic and hereditary disease for which there was no cure." His symptoms, he was told, would worsen and result in an increasing paralysis. His doctor told him that he would soon be confined to a wheelchair. If he was lucky, he might live another 12 years before an infection or hearth attack killed him. "My physician compared it to playing the lottery, where the chances of winning are slim. In a way, I guess I won the jackpot!" |
