“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.
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 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.
“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.
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.
“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.
“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.
