Previous to her situation worsening, Emily beloved to compete in magnificence pageants, however this real-life sleeping magnificence needed to give them up due to her sickness. An much more devastating impact of it, nonetheless, is the truth that it’s meant she hasn’t attended college in two and a half years.
The 16-year-old has been hospitalized on numerous events too, and due to the danger of her dying in her sleep, hasn’t slept alone in eight years.
Emily’s mother Brandi is now her full-time carer and mentioned that it’s “tough to place into phrases” how scary the situation makes her daughter’s life.
The primary signal that there was one thing significantly unsuitable with Emily got here when she started to complain about extreme complications.
This led to Emily being identified with epilepsy eight years in the past, nonetheless, due to the seizures this precipitated, she ended up creating a type of dementia, which has utterly stopped her from dwelling her life as a standard teenager.
Nevertheless, the 16-year-old did handle to go to promenade along with her boyfriend IV Hickam, 17.
“It makes on a regular basis actions so onerous. Simply making an attempt to get make-up on is hard – issues that different teenage ladies do daily with ease,” Emily mentioned.
“My mother has to do it as a result of I can’t keep awake to. I don’t have the coordination to do it as a result of seizing both.”
“The situation additionally makes getting dressed tough. There’s video of me actually falling asleep standing up making an attempt to prepare within the morning. It occurs in eating places when I’m out with my boyfriend or household. It occurred at college.”
To see how Emily struggles with day-to-day life, watch her within the video under:
“My mother has footage of me holding my college books as I struggled to remain awake heading out to class.”
Emily mentioned that the impact she has struggled most with is the influence which her situation is having on her future.
“The truth that my complete life, each facet of it, has been disrupted and my capability to go to highschool and be taught and be an lively teenager has been taken away is most upsetting,” she added.
“The toughest half is watching the life I had deliberate slip away. However I’ll by no means quit.”
Previous to stopping her training, Emily had been a excessive achiever at college, and though her signs manifested themselves at an early age, it was years earlier than her situation was lastly identified.
“When Emily was youthful, she began to complain of actually dangerous complications,” Brandi mentioned. “She began to get actually sleepy. Emily had all the time suffered on street journeys however we thought it was regular automotive illness.”
“It was solely with hindsight that we now acknowledge that these items had been all linked.”
“Emily started lacking extra college. Some days, we simply couldn’t wake her.”
“It’s onerous to place into phrases how scary it’s. She misses out on actions as a result of she is ‘asleep’ usually greater than 20 hours a day.”
“She will be able to sleep for days and can have to be put onto a drip as she will not be getting the meals and water she wants. When she is awake, she places her finest foot ahead regardless of how sick she is and all the time places others earlier than herself.”
We want to take this chance to want Emily all the perfect for the long run. Hopefully, her determination to share her story will result in a means of her high quality of life being developed sooner or later.