Jun 16 2019
Narcolepsy Changes One Seven Year Old Boy’s Life Forever

Narcolepsy Hits Ben at age seven and drastically changes his life and his family’s life forever.

For the first seven years of his life, Ben was a normal, energetic, vivacious child. In 2012 all of that changed and Ben, once active and playful, began spending worrisome amounts of time sleeping and napping. Noticing his significant shift in behavior, Ben’s mother, Kristen, took him to a doctor where he was diagnosed with Lyme Disease – a tick-born infection with common symptoms of fatigue and exhaustion.

Armed with a seemingly sensible diagnosis, seven-year-old Ben began treatment for Lyme Disease with the hope that his symptoms would subside and he would return to his previously entergetic self. After six months of treatment, it became clear to Kristen that her son’s symptoms were not getting better. In fact, Ben’s symptoms began to worsen as he developed a slack jaw to accompany the fatigue and irregular sleep habits. Also, one time at school, Ben laughed so hard at his friend’s joke he collapsed in line.  The teachers were worried and called to report the incidence. Concerned, Ben’s doctors suggested he participate in a sleep study, after which he was given a new diagnosis in addition to the Lyme disease. Ben’s family was informed that he suffered from Narcolepsy, a chronic sleep disorder. Although it has not been proven, Ben’s doctors have hypothesized that the Lyme Disease may have triggered the Narcolepsy.

Upon receiving the diagnosis of Narcolepsy and Cataplexy in February 2013, Ben was immediately put on medications to help ease his symptoms. The past three years have been non-stop trial and error to find a combination of medications that are most effective and least disruptive to the lives of Ben and his family. But unfortunately, without a cure, the medications only mask the Narcolepsy and Cataplexy symptoms that Ben experiences daily.

Since receiving his diagnosis, Ben’s parents have become his biggest advocates, struggling to ensure that he is able to live a relatively normal life. Despite their active support, Ben’s family expresses several new worries that have emerged since his diagnosis – such as, will he be able to do things without assistance and will he ever feel normal. These new worries have become staples in Ben’s household, and as he grows older new worries will surely emerge. Narcolepsy and Cataplexy have partially stripped Ben of his current and future independence, and he is now plagued by anxiety and moodiness that are not typical of his young age. Day-to-day activities now require planning and preparing, and Ben and his family are now chained to a schedule and regime of daily medications. Eleven years old now, Narcolepsy and Calaplexy have significantly altered Ben’s life and forced his family to find new ways to ensure their son’s long-term happiness and success.