As a paediatrician over the past three decades, Murdoch Childrens Research Instituite (MCRI) Director Professor Kathryn North has seen first-hand the positive difference that research makes to the health and wellbeing of our children.
Unfortunately, there are still many problems to be solved. We strive to find cures and better therapies for serious childhood illnesses including cancer, heart disease, epilepsy, obesity, diabetes and allergies.
Every time we save a child’s life Professor Kathryn is reminded of why we are so passionate about what we do at MCRI.
Today, we want to share a remarkable story that demonstrates why your support for medical research at MCRI is vitally important.
What would you do if your child was having violent and dangerous epileptic seizures that could not be stopped with medication?
When Ash was three-years-old, he was playing at home with his dad Greg. He was talking and suddenly paused mid-sentence, lifted his left hand to his head and started laughing. He resumed his conversation completely unaware of the interruption.
“When Ash stopped talking to me and started laughing strangely, I thought it was just a three-year-old boy being funny but he repeated the behaviour over the following two days,” Greg recalls.
We went to our GP who sent us straight away to a neurologist. That’s when the emotional roller coaster began.”
Ash was admitted to hospital immediately after seeing the specialist and it was confirmed he was having epileptic seizures. Doctors gave Ash the standard medication treatment
for epilepsy but the frequency and severity of Ash’s seizures increased.
Epilepsy is a neurological condition involving recurring convulsive and non-convulsive seizures. This disease is more likely to be diagnosed in childhood or senior years, however is not limited to any group, sex, race or age.
Regular medication and a balanced lifestyle can help most patients to live an active life*.
Unfortunately over 235,000 Australians live with epilepsy and one in 10 will have a seizure at some point in their life**. Many of these are children for whom medication simply does not work.
“It was a hit-and-miss with the medication Ash was given,” says Greg. We had to change the medication dose constantly as well as introducing two or three additional drugs to control the seizures but they constantly broke through and this pattern continued for years.
“As a parent it is devastating to watch your bright, outgoing, social and happy son become quiet and withdrawn.”
After several years on the medication roundabout, an MCRI researcher who specialises in neuroimaging techniques identified the source of Ash’s epilepsy. “Finally, seven years after diagnosis and using the MCRI Research MRI scanner, Ash’s medical team discovered an abnormality in the brain near the right frontal lobe. This was the first time we had concrete evidence of the cause of his epilepsy,” Greg explains.
Thanks to this technology and expertise, Ash became eligible for epilepsy surgery and had an operation to remove the abnormal part of his brain causing the seizures.
“This was the day that changed our lives. Ash has not had a single seizure since then and, in August 2016, he took his last anti-epileptic medication tablet. Whilst recovery from seven years of epilepsy and medication will be gradual, we now have hope for Ash’s future,” Greg says.
Ash is now a bubbly and energetic 10-year-old boy who enjoys life, performing arts and being creative.
He would like to build high-performance cars with his brother when he grows up. “The great thing is, with epilepsy all but gone from his world, he has every chance of achieving whichever dream he decides to follow,” says Greg. We know that he will be limited only by his imagination and drive and not by his health – and for that we will be eternally grateful to the MCRI team.”
At MCRI we are committed to finding better treatments and cures to give a healthy start to life to children everywhere. On behalf of our committed researchers and the children we care for, we would like to sincerely thank you for your generosity.