Sritharan Ravichandran spits into a cup being collected by research assistant Catherine Deveault down the street from the Hospital for Sick Children on April 29, 2009. The hospital gathered samples from Tamils protesting on University Ave. to help pinpoint the cause of a Tamil girl's retinal disorder.
Can 56 angry Tamils save one girl's sight?
April 30, 2009
Staff Reporter
The deadline to get the 11-year-old into a program that could save her sight was looming. So the team from the Hospital for Sick Children, carrying dishes to collect saliva and stacks of consent forms, raced outside to the protest.
"We are here to allow a little girl to receive a gene therapy treatment so she won't go blind," said Dr. Elise Héon, ophthalmologist-in-chief at Sick Kids.
Héon helped monitor the collection of saliva from Tamil protesters who have shut down University Ave. outside the American consulate since Sunday, demanding that Canada and the U.S. intervene in the conflict in Sri Lanka.
Their young patient, who is legally blind and an outpatient of the hospital, has been diagnosed with Leber congenital amaurosis (LCA), a retinal disorder usually diagnosed soon after birth.
Héon needed to confirm that a genetic mutation believed to be the cause of the condition is uncommon among Sri Lankan Tamils.
If they could do that, the girl would remain in a gene therapy trial that could improve her sight. But the deadline to collect and test the samples was last night.
With the clock ticking, they needed to assemble a control group, or cluster, of at least 50 Sri Lankan Tamils willing to donate their saliva for genetic testing. If the genetic mutation is common among the control group, Héon's team knows it is not causing the girl's disease.
So the girl, who lives in Toronto and is of Sri Lankan Tamil descent, would be dropped from the gene therapy trial, which will take place in the United States.
"She was being removed, so we said, `No, no, don't remove her, we will find a control.' So all week we have been looking for Tamil people," Héon said.
The researchers had reached out to colleagues and friends, but by yesterday morning they had only 36 samples. That's when they made the decision to head outside. They did better than expected: In a short period of time the enthusiastic crowd boosted the total to 56.
Among the willing participants was Sritharan Ravichandran, 45. "My mouth is dry," said Ravichandran, after making several attempts to fill the container.
Also ready to help was Hariharan Navaratnarajah, 27.
"I think it is great thing they are doing – it is always great to help with scientists," said Navaratnarajah after handing over his contribution to the team.
"It is amazingly helpful. We can't thank the community enough for participating in this," said Gail Billingsley, 55, a research associate.
Toronto has a large Sri Lankan Tamil community, so the samples can be used for additional research, she said.
"I know it is just one person right now, but it can help others in the future."
Billingsley explained that the genetic mutation that qualified the child for the trial was identified a few years ago, but only Caucasians and south Asians were tested.
At the time, that was considered sufficient, but improved scientific techniques demanded deeper testing, she said.
Since Sunday evening hundreds, occasionally thousands, of Sri Lankan Tamils have been protesting inside a blocked off portion of University Ave. between Dundas St. and Queen St. W.
Catherine Deveault, a clinical research co-ordinator for Héon, said the protesters needed very little encouragement to donate.
"They were all very nice and very willing to participate. We didn't get any negative reactions."
Deveault said they expected the test results to be ready last night.
"We were out of solutions. So we did what we had to do."