One morning last winter, a young man lay sprawled on the pavement near the Oral Health Centre at QEII. He heard footsteps approach him, stop, then hurry on. Then he heard a truck slow down, then drive off. Neither the pedestrian nor the driver offered him any help and Tony Phan was in too much pain to ask for it.
A few weeks later, he was luckier. He fell outside the Medical and Dental Library and was found by an oral surgeon. “He asked me if I was OK and, for the first time since my diagnosis, I was able to say to somebody at my workplace: ‘I have Motor Neurone Disease’,” Assistant Professor Phan said.
Tony Phan (30), the bright young molecular biologist who had devoted his life to medical research, had been too afraid to tell anybody at OHCWA and the School of Dentistry that he had a debilitating and terminal disease.
“It was stupid I suppose,” he said. “But I had no idea I would get such brilliant support from my colleagues and from everybody in the University.
“MND usually affects elderly people. But I’m not an old bugger – I’m a young bugger and I want to keep working as long as I can. I have a wife and children and a mortgage to support.”
A/Professor Phan noticed, about two-and-a-half years ago, that the muscles in his biceps kept jumping. MRI scans and blood tests showed everything was normal. It was nearly 18 months later that he was finally diagnosed with MND.
He is now in a wheelchair, unable to lift his arms from his lap. He can just manage to walk about five metres with the aid of a stick.
The father of two cannot feed himself or use a computer keyboard. He works with the aid of voice-activated software.
“Everybody has been so helpful,” he said. “Averil Riley, the occupational therapist from Safety and Health, has been involved with everything you see here that helps me to work: the electric wheelchair, the special computer software, the desk that I can fit my wheelchair underneath. My research assistant, Marisa de Pinho is brilliant. Our School Manager, Stephen Home, is a wonderful support; as are Head of School, Andrew Smith; before him, Paul Abbott; and Mithran Goonewardene. The School installed automatic doors so that I could get through in my wheelchair. And I’ve had terrific help from the Multiple Sclerosis Society.
“But all the support in the world doesn’t change the fact that my life expectancy is three years from diagnosis. If I’m still alive in two years, I will be completely paralysed.
“My career is no longer about getting promotions, but just keeping my mind active. I’m so glad I can still do my work. This voice-activated software enabled me to write an NHMRC grant totally on my own. I was pretty chuffed by that.”
But it doesn’t stop him from feeling frustrated and angry.
“It has challenged the way I think about God and karma,” he said. “I don’t worry about myself but I worry about my wife Verity and my children. When it gets worse for me, it will also get worse for them.”
A/Professor Phan’s daughter Kayla is nearly four, his son Michael is six months old. Verity was already pregnant with Michael when her husband was diagnosed in March last year.
“When my son was born, I couldn’t hold him,” he said. “I defined my role as a husband and a father in physical terms: I’m the one who fixes the taps, mows the lawn and carries the children. Now I have to see myself from a different perspective.”
He says his work is the only thing that distracts him from dwelling on his condition. He is supervising a PhD student, Danny Young, through a project to extract stem cells from teeth.
“Every day, healthy teeth are extracted (usually from a crowded mouth) and thrown away. Here, at OHCWA, there are five or six every day. We’re extracting the cell population from them in the hope that we can purify and cultivate the cells and use them as stem cells.”
A/Professor Phan has a vision for a stem cell library for research.
“There are so many healthy teeth we could use, and there isn’t the controversy associated with embryonic stem cells,” he said.
His research has been featured on the front page of UWAnews twice in the past five years: work on a potential therapy for osteoporosis that came from his PhD research; and the regeneration of dental tissue that might do away with false teeth. That research will become his legacy.
- From UWA News 3 May 2010