Monkol Lek was born in the midst of the Pol Pot’s brutal Khmer Rouge regime. Nearly two million Cambodians were killed in the civil strife, and Lek’s parents decided to flee the country with their seven children.
After arriving in Australia as refugees in 1981, the family lived in a refugee hostel in Sydney, and eventually moved to the western suburb of Bankstown.
Lek grew up there in Bankstown until he completed his undergraduate degree of Computer Engineering at the University of New South Wales (UNSW) in 2000 and began working with IBM.
The Lek Family photo Source: Client Image
Then, just a few years later, as his health began to decline, he was diagnosed with a rare muscular dystrophy disease.
“I had a lot of muscle pain,” Lek tells SBS Khmer. “I felt very tired after standing on the train and on the bus for an hour-and-a-half each way to University. My muscles were really sore and weak and I felt tired all the time because of that.”
Determined as he had always been, he quit his job and returned to UNSW to complete another two degrees in order to seek a cure for his untreatable disease.
Lek describes the difficulty he encountered with his disease.
“I had problems going upstairs... then I have problems walking, I would fall over a lot because of uneven surfaces. Now I walk with a walking stick and if I have to go long distances I use a wheelchair.”
Lek completed a PhD in Medicine at the University of Sydney in 2012 and did his post-doctoral training in Harvard Medical School. Now he is an Assistant Professor of Genetics at Yale University, continuing his research to cure his own disease.
Dr. Lek says that his rare muscle disease is genetic. Indeed, his parents are the carrier of the muscle disease, which is carried on a recessive gener, which Lek says, meant there was always a 25 per cent chance that one of their children would have the disease. As they have seven children, Lek and his elder sister drew the short genetic straw.
Prof. Monkol Lek at his lab in Yale University Source: Client Image
“My work now at Yale is that I don’t just want to work on finding a genetic diagnosis for people,” says Lek. “But also to work on trying to find a treatment for them, using new genetic technologies that have only become available in the last two to three years. These technologies allows us to actually turn the [genetic] mutations back into healthy DNA.”
Lek has called on people with this rare disease to contact him, as he loves to hear from them and to see if he can help them. The more people he finds, Lek says, the better chance he has of furthering the research and treatment.
“My disease is found in Chinese people and my family is Chinese-Cambodian,” he says. “And one of the challenges is to find more patients with my muscle disease.... If I can find more patients, then we can actually start clinical trials whenever they develop treatment, but we have to have enough patients for those clinical trials. So, because it’s genetic there may be other Cambodian people with that disease.”
Professor Monkol Lek will be speaking at TEDxSydney on Friday 24 May.
