PROFESSOR Andrew Kornberg, one of the leading paediatric neurologists in the country, paid a visit to one of his patients in Port Macquarie on Monday (March 27).
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He is currently in the midst of solo circumnavigation of Australia to visit patients with spinal muscular atrophy (SMA), raising money for a very special program.
Prof Kornberg flies in a single engine plane, departing from Melbourne on March 5, fundraising as part of the Good Friday Appeal for the Complex Movement Program at the Royal Children’s Hospital. To date, he has raised more than $150,000.
The program is to combine research and care in a clinic where there are neurologists, surgeons, orthopaedic surgeons, geneticists and others in one particular place, rather than being scattered.
“We are also trying to develop deep brain stimulation to help with patients’ movement,” Prof Kornberg said.
“Children with not only SMA but cerebral palsy, acquired brain injuries, genetic disorders where they have abnormal movements that affect their function, will benefit from the program.”
Although quite tired from the long trip, Prof Kornberg was thrilled to be able to visit patients who would not normally see outside of his clinic in Melbourne.
Seeing the patients that I have seen in Melbourne over many years has been a fantastic thing, and it was great to see Finn’s smile.
- Prof Andrew Kornberg
“Seeing the patients that I have seen in Melbourne over many years has been a fantastic thing, and it was great to see Finn’s smile,” he said.
“I’ve been treating him for a while. The nerve cells in his spinal cord degenerate and mean that he is weak and dependent on a lot of his care.
“The good news is that there are treatments becoming available to Finn that will transform his life, hopefully within the decade.”
There is a drug available and registered in the United States, with trials conducted in Melbourne, that makes a huge difference to children with SMA.
“We hope that it gets funded here in Australia,” he said.
“The way I look at it is that the government provide the bricks and mortar, but excellence comes from philanthropy, like people giving, and that is the excellence quotients that we can actually give for our kids. “
Finn’s mother, Donna Liver, said it was great to see Andrew, and that his hard work to fundraise will be for the greater good.
“The more that we can support what Andrew is doing ultimately Finn is going to have some benefits from it,” she said.
“Finn is going excellent. Andrew and I made a pact seven years ago. It’s my job, as Finn’s mother, to keep him as healthy and happy as possible and it is Andrew’s job as his doctor to find that treatment or cure.”
Visit www.flyforthekids.org.au to find out more information, and to donate.