Sofi has 100 seizures a year. Her father runs marathons to raise awareness about epilepsy

Rafael Garcia plans to run 25 straight hours to support research for treatments of epilepsy and help families who, like his, have a member with this condition.

Rafael Garcia with his wife Melisa and daughters Bronte and Sofi (R). Credit: Rafael Garcia

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

Sofi, who is three-and-a-half years old, was diagnosed at six months with Dravet Syndrome, a rare form of epilepsy caused by a genetic mutation.

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

Just this year alone, Mr Garcia said Sofi had had 100 seizures of varying duration and intensity and with a frequency of one or two a week; although in the last month-and-a-half, she had had only two.

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

“In her case, she is completing her developmental stages, although she does have some delays because she can't jump with both feet and she doesn't run the way a child her age should be running,” Mr Garcia said.

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

Despite the difficulties, Mr Garcia has been participating in fundraising event “Walk for Epilepsy” since 2021, a few months after learning of Sofi's diagnosis.

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 Epilepsy Foundation, 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

The organisation predicts that one in 25 Australians will be diagnosed with epilepsy.

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

On 30 September, Mr Garcia says he expects to raise $5,000 while Mrs Garcia plans to walk 100 kilometres between 1 and 25 October.

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

“Or having someone clean your house ... when you've only slept three hours and you've had your eight-hour work day, (then) you come home and have to do your housework ... it's very stressful," he said.

Listen to the interview with Rafael Garcia by pressing the icon under the title.