Highlights:
- One in 25 Australians will be diagnosed with epilepsy in their lifetime, but 90 per cent won't have access to the support they need.
- The “Walk for Epilepsy” project seeks to raise awareness about the reality of epilepsy.
- Rafael Garcia, whose daughter has epilepsy, plans to run 25 hours non-stop to raise funds and support the cause.
On 30 September, Sofi's father will run for 25 hours non-stop to draw public attention to epilepsy, a condition affecting his daughter.
The 34-year-old Venezuelan living on the Gold Coast has been taking part in “Walk for Epilepsy” events since the family learned of Sofi's diagnosis in 2021.
“This (run) represents the challenge of (my) everyday life, being aware, constantly moving, aware that my daughter may have a seizure at any time, not sleeping ... always looking for a positive side and always moving forward,” Rafael Garcia told SBS Spanish.
Rafael Garcia with Bronte, Sofi and wife Melisa. Credit: Rafael Garcia
According to data from the Dravet Syndrome Foundation, the condition affects one out of every 15,700 with epilepsy.
Mr Garcia said those with the condition could experience seizures lasting between 15 and 90 minutes which in turn could lead to lasting mental and physical changes.
Sofi García Credit: Rafael Garcia
In each case, she must be given a drug to stop the seizure, which leaves her very weakened, says Mr Garcia.
In cases where the seizure was prolonged, an ambulance was called, he added.
In Sofi's entire life, we've been to the hospital about 300 times.Rafael Garcia
Sofi Garcia in hospital after a seizure. Credit: Rafael Garcia
He said one of the most challenging aspects of epilepsy was that Sofi's brain didn't "switch off" easily, resulting in her spending a lot of time awake.
This then affects the whole family, including his wife, Melisa, and their 12-month-old baby, Bronte.
“Last night, for example, (Sofi) woke up at 1.30am after going to bed at 8pm and went back to sleep at 4am in the morning. We were awake for three hours during the night, and the next day my wife and I had to go to work,” he said.
Both Melisa and Rafael work as well as care for their young daughters, Sofi (L) and Bronte (R). Credit: Rafael Garcia
Since then, he has run 31 half marathons and 30 sprints, raising nearly $13,000 for the Epilepsy Foundation to research new treatments and support families with a member with this condition.
According to data from the, more than 260,000 people in Australia, or approximately one per cent of the population, have epilepsy.
However, despite the prevalence of epilepsy in Australia, 90 per cent of people don't have access to the support they need, according to the foundation.
Rafael Garcia participating in a "Walk for Epilepsy" event. Credit: Rafael Garcia
Although Sofi has treatment to control seizures with a combination of drugs that are frequently reviewed by her neurologists, her future is uncertain, according to her father.
“After the age of five, the disease stabilises, but problems begin when it comes to walking, care and development ... it's a very rare syndrome and an (effective) treatment has not yet been found,” Mr Garcia said.
Sofi García. Credit: Rafael Garcia
The couple has also created the "1in25" project, which involves making T-shirts and raising funds to support families like theirs and provide them with services such as caregivers or cleaners.
“Simple things like being able to go out for coffee for two hours help mentally and are very important,” Mr Garcia said.
Melisa and Rafael Garcia are walking and running for charity. Credit: Rafael Garcia
Listen to the interview with Rafael Garcia by pressing the icon under the title.
