Sofi has 100 seizures a yr. Her father runs marathons to lift consciousness about epilepsy

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Highlights:

One in 25 Australians will probably be recognized with epilepsy of their lifetime, however 90 per cent will not have entry to the help they want.
The “Stroll for Epilepsy” venture seeks to lift consciousness concerning the actuality of epilepsy.
Rafael Garcia, whose daughter has epilepsy, plans to run 25 hours continuous to lift funds and help the trigger.

On 30 September, Sofi’s father will run for 25 hours continuous to attract public consideration to epilepsy, a situation affecting his daughter.

The 34-year-old Venezuelan residing on the Gold Coast has been participating in “Stroll for Epilepsy” occasions because the household realized of Sofi’s analysis in 2021.

“This (run) represents the problem of (my) on a regular basis life, being conscious, continually shifting, conscious that my daughter could have a seizure at any time, not sleeping … at all times searching for a constructive aspect and at all times shifting ahead,” Rafael Garcia advised SBS Spanish.

Rafael Garcia with Bronte, Sofi and spouse Melisa. Credit score: Rafael Garcia

Sofi, who’s three-and-a-half years previous, was recognized at six months with Dravet Syndrome, a uncommon type of epilepsy brought on by a genetic mutation.

In line with information from the Dravet Syndrome Basis, the situation impacts one out of each 15,700 with epilepsy.

Mr Garcia stated these with the situation may expertise seizures lasting between 15 and 90 minutes which in flip may result in lasting psychological and bodily adjustments.

Sofi García Credit score: Rafael Garcia

Simply this yr alone, Mr Garcia stated Sofi had had 100 seizures of various period and depth and with a frequency of 1 or two per week; though within the final month-and-a-half, she had had solely two.

In every case, she have to be given a drug to cease the seizure, which leaves her very weakened, says Mr Garcia.

In circumstances the place the seizure was extended, an ambulance was known as, he added.

In Sofi’s total life, we have been to the hospital about 300 occasions.

Rafael Garcia

Sofi Garcia in hospital after a seizure. Credit score: Rafael Garcia

“In her case, she is finishing her developmental phases, though she does have some delays as a result of she will’t soar with each ft and he or she would not run the best way a baby her age ought to be working,” Mr Garcia stated.

He stated probably the most difficult facets of epilepsy was that Sofi’s mind did not “change off” simply, leading to her spending loads of time awake.

This then impacts the entire household, together with his spouse, Melisa, and their 12-month-old child, Bronte.

“Final evening, for instance, (Sofi) awoke at 1.30am after going to mattress at 8pm and went again to sleep at 4am within the morning. We had been awake for 3 hours through the evening, and the following day my spouse and I needed to go to work,” he stated.

Each Melisa and Rafael work in addition to care for his or her younger daughters, Sofi (L) and Bronte (R). Credit score: Rafael Garcia

Regardless of the difficulties, Mr Garcia has been taking part in fundraising occasion “Stroll for Epilepsy” since 2021, a couple of months after studying of Sofi’s analysis.

Since then, he has run 31 half marathons and 30 sprints, elevating almost $13,000 for the Epilepsy Basis to analysis new remedies and help households with a member with this situation.

In line with information from the, greater than 260,000 folks in Australia, or roughly one per cent of the inhabitants, have epilepsy.

Nevertheless, regardless of the prevalence of epilepsy in Australia, 90 per cent of individuals haven’t got entry to the help they want, in line with the muse.

Rafael Garcia taking part in a “Stroll for Epilepsy” occasion. Credit score: Rafael Garcia

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

Though Sofi has remedy to regulate seizures with a mix of medicine which might be ceaselessly reviewed by her neurologists, her future is unsure, in line with her father.

“After the age of 5, the illness stabilises, however issues start with regards to strolling, care and growth … it is a very uncommon syndrome and an (efficient) remedy has not but been discovered,” Mr Garcia stated.

Sofi García. Credit score: Rafael Garcia

On 30 September, Mr Garcia says he expects to lift $5,000 whereas Mrs Garcia plans to stroll 100 kilometres between 1 and 25 October.

The couple has additionally created the “1in25” venture, which entails making T-shirts and elevating funds to help households like theirs and supply them with companies equivalent to caregivers or cleaners.

“Easy issues like having the ability to exit for espresso for 2 hours assist mentally and are crucial,” Mr Garcia stated.

Melisa and Rafael Garcia are strolling and working for charity. Credit score: Rafael Garcia

“Or having somebody clear your own home … whenever you’ve solely slept three hours and you have had your eight-hour work day, (then) you come residence and need to do your home tasks … it’s totally aggravating,” he stated.

Take heed to the interview with Rafael Garcia by urgent the icon below the title.

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