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Surinamese
Dr. Munraj Singh's |
Leading scientists from around the world were in Pittsburgh during the weekend of June 22-23 to present their work to their toughest, but most supportive, audience: the parents of children who have the lethal disease they are studying.
Dr. Muniraj Singh, of Suriname, was one of about 400 parents and grandparents who had traveled to listen to researchers at the annual conference of Parent Project Muscular Dystrophy. Others came from Brazil, India, Iceland or any of about 20 other countries to attend the nonprofit group's meeting at the Omni William Penn Hotel, Downtown.
Singh's oldest son, Giovanni, died five years ago from Duchenne muscular dystrophy. He was 12.
The muscle disease is caused by a genetic defect that is passed to male children on their mother's X chromosome. Over time, a boy with Duchenne muscular dystrophy stops walking. The diaphragm, a layer of muscle between the chest and abdomen, also deteriorates. Boys die in their late teens or early 20s, often from respiratory failure.
"No doctor knew about Duchenne in my country," Singh said. "[Giovanni] looked me in the eyes a minute before he died and he said, 'Papa, take care of the other children.' "
Singh's other son, Josiah, 9, also has Duchenne. He still can walk, but slowly and not very far, and he falls down.
And there are many other children who have the disease in Suriname. Singh has already counted more than 900 cases in a population of fewer than 400,000 people. Because of marriage between blood relatives, which increases the likelihood of passing on the abnormal gene, the disease often turns up. He and his wife have started an orphanage for children who have no parents, or whose families cannot care for them.
In Suriname, "I have to do everything myself," Singh said. "There is little information. So all the information my country is getting is what I give."
Th2 June 22-23 meeting was the second Parent Project conference he had attended. Pat Furlong, president of the organization, inspired him to begin a similar project in his homeland 18 months ago.
"Every time I come to America, my son always says, 'My father will return back with a cure for me,' " Singh said.
According to Furlong, more funding for research in muscular dystrophies could be on the horizon. The group, working with the Muscular Dystrophy Association, has bills in the House and Senate that, if approved, would create centers of excellence to accelerate the development of promising treatments.
Furlong, of Middleton, Ohio, has a master's degree in nursing and her husband is a physician. Their two sons died of the muscle disease.
"It's frustrating," she said. "You can help people in all sorts of ways. You come home and you can't help the kids."
The annual conference gives parents a chance to hear what the scientists have been working on and ask them questions.
"You wonder if your brain is the size of a pea compared to the people who are speaking," Furlong said. "You learn something new every year."
But it was clear in the question period following the scientific talks that audience members wanted more than an education.
As Singh put it, "I sit there and think, 'Oh, Lord, when will all this talk and talk and lab experiments finish? How long does it take to go from the mice to my child?"
(Reprinted from the Pittsburgh Post Gazette.)