Samuel's Epilepsy Story - Epilepsy Queensland - share your story
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Samuel's Epilepsy Story

Samuel is just three years old, and like a lot of little boys loves Lego and puzzles. However, that gorgeous smile belies some really tough challenges that Samuel has to confront daily. Samuel lives with Tuberous Sclerosis Complex and epilepsy.

Amber, who works as a Special Needs Educator says: “Samuel is a beautiful, fun-loving, cheeky and rambunctious little boy, who unfortunately has to deal with difficult to control seizures.”

Samuel was diagnosed with epilepsy at one year of age after undergoing an EEG, not long after experiencing his first seizure. The EEG also detected Samuel had been experiencing sub-clinical seizures (that show no outward clinical signs or symptoms).

Despite taking medication, after another eight months Samuel’s seizures were still not controlled. Amber took Samuel for further testing and an MRI revealed more than one dozen tubers on his brain, which led to a subsequent diagnosis of TSC.

Tuberous Sclerosis Complex affects more than 2,000 individuals in Australia and thousands more carers, families and friends who live with the impact of the disease. TSC tumours can grow in any organ of the body, commonly affecting the brain, skin, heart, lungs and kidneys. TSC can also cause epilepsy, developmental delays and autism, which has been Samuel’s experience.

Samuel endures many different types of seizures, including focal and absence seizures and myoclonic jerks. He takes numerous medications and rescue medication when required. Big sister Arianna, aged six, is very protective and loving towards her brother, and often alerts Amber when Samuel is having a seizure.

Amber has had to consistently advocate for Samuel to get the support he needs due to some health professionals not being familiar with, or understanding TSC.

“It’s been a tough road. It’s especially hard when his seizures are not your typical epilepsy seizures. When you have to argue with ambulance officers to administer Midazolam after a seizure has continued for 30 minutes. When you have to explain to the doctors in the emergency department what his condition is, and how to spell it. When you have to demand to see the neurology team to see if he needs an EEG or medication review instead of just being sent home. This is why we need to spread awareness for Tuberous Sclerosis Complex and bring it out of the shadows… just like we do for epilepsy.”

Since January, Amber says Samuel had been struggling with frequent seizures- from five to ten every day but has recently celebrated seven days seizure-free. Wonderful news Samuel!

Despite no known cure, with appropriate support, most people with TSC can live fulfilling lives. For more information about TSC and epilepsy, and how you can help, please head to ?️

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