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Unraveling the Mystery: A Family's Decade-Long Quest for Diagnosis and Treatment

Writer's picture: Jenna RuizJenna Ruiz

There are endless conditions that no one has been able to figure out. Many people are stuck suffering from something that they cannot cure. The amount of incurable diseases is high, but the amount of diseases that we don’t know exist are impossible to comprehend. 

Tessa Nye started having seizures when she was born. After many tests, she still wasn’t able to figure out what was causing these seizures. At the time, very little was known about her type of epilepsy, making it even harder for her to find ways to prevent these seizures. Research is constantly being done for a range of conditions, but we will never be able to know how to cure everything. Bringing awareness to families like Tessa’s is extremely important.

Tessa’s family spent years trying to find a diagnosis for their daughter who had over 100 seizures everyday. No doctor knew the reasoning behind these seizures. After two more children who were healthy, the parents started to believe that these seizures were not genetic, but a rare condition Tessa was unlucky to have. Unfortunately, Tessa’s third sibling, Colton, faced seizures soon after he was born.

Picture of a brain
Getty Images

Since they had another person with this condition, doctors were finally able to compare the children and their parent’s genes to find the single-gene mutation that caused these seizures. 

After 10 years of looking for a diagnosis, this family was finally able to find one and start doing more specialized treatments.

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