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Little Scarlett loves swimming. Splashing around in the cool water is just what any child wants to do on a hot Summer’s day.
But Scarlett will never be safe in the water, not as long as her seizures remain uncontrolled.
Scarlett has refractory epilepsy, so while medication has reduced her seizures to a degree, they will never disappear completely.
But the seizures aren’t the only thing that will never disappear. For Kindalon and Damien, Scarlett’s parents, the constant worry of when her next seizure will occur, the never-ending ambulance and hospital trips, the heightened sense of fear and anxiety – all these things and more will never leave them.
Scarlett was just five and a half months old when she had her first seizure – it lasted over an hour and she had to be admitted to the Queensland Children's Hospital for four days. A second seizure followed just over a month later, and she was diagnosed with epilepsy.
“For the first six months we were in and out of hospital so frequently we were having to send our other daughter to [live with] family,” recalls Kindie, Scarlett’s mum. “It was very difficult to process for all of us, the constant worry of when the next seizure will come, if Scarlett will be okay and how her big sister is coping with seeing this and the change of lifestyle for her at 7 years of age.”
It was a challenging time for the family, made worse by the constant changes to Scarlett’s medication in an attempt to find one that worked. During this process, doctors found Scarlett was unresponsive to three medications and allergic to another three, worsening her seizures.
“[They] exacerbated the seizures, made them worse and more frequent,” says Kindie, “It was five months of drop seizures, tonic clonic seizures and myoclonic jerks”.
While doctors have managed to find a combination of medications that reduce the frequency of Scarlett’s seizures, this bubbly 20-month-old continues to have her life threatened by the uncontrolled electrical activity in her brain. Every time young Scarlett has a seizure they last over five minutes, meaning they are prolonged and classed as status epilepticus which has the potential to cause severe brain damage. As recently as last month, Scarlett had one of her longest seizures to date – a terrifying 90 minutes.
Avoiding seizures at all costs is paramount and puts enormous pressure on Scarlett’s family. “We’re always trying to keep her well and healthy all year round as illness makes her seizures so much worse,” Kindie explains. “When she has a cold or flu or is unwell, we have to put her on a higher dose of meds for 3-5 days and that makes her quite tired and disorientated. Coming on and off those meds can be quite tough on her.”
It has been long road processing what this epilepsy diagnosis means for Scarlett and her family.
Kindie describes receiving Scarlett’s diagnosis as “stressful, life-changing, overwhelming and sad. We were scared for the future but just hoping for the best outcome”.
It’s times like these when a compassionate and caring support network can make a world of difference.
Confused and unsure of what the future held for her daughter, Kindie reached out to the National Epilepsy Support Service to seek advice on the diagnosis pathway they were currently navigating.
“In the beginning I contacted Epilepsy Queensland just to help me answer a few unknown questions,” says Kindie. “I spoke with one their team members, Clara, and spent over half an hour on the phone with her.”
“Scarlett was still trialing medications and it was so hard just to see her going through that. Clara helped ease some of the worries we had, as a shoulder to lean on in that moment, and she reassured us. It may have only been one initial phone call, but I feel like she helped create a clearer path of what the future with such a complex case of epilepsy can hold.”
Knowing that they had someone to turn to, who were understanding of the unique struggles they were facing, gave them a sense of hope that they could manage their little girl’s condition.
"Epilepsy Queensland were so helpful in clearing my mind a little bit and helping us."
“We still live a relatively normal life… we just take it day by day, try not to worry about the future and live for the now as you never know what is around the corner. We can never be complacent because epilepsy will throw a curve ball in when we least expect it.
“Scarlett is such a fearless warrior; even after everything she has been through, she keeps proving everyone wrong.”