Welcome to the Planet 66 Foundation


EmilyIn February of 2014 Emily received the H1N1 Flu mist vaccine. Approximately 3 months later Emily started having symptoms of cataplexy; at the time her family did not know what cataplexy was. Emily was watching a comedy on TV and lost control of her neck muscles and her head fell backwards. She was experiencing weak feeling in her legs with unexplained fevers and rashes.


Emily was sleeping more and more, and would fall asleep within a matter of minutes. Her family thought she was going through typical pre teen issues as she was about to turn 13 that winter.


As it became more and more disruptive to her daily life, they decided to visit her pediatrician. Waiting for the doctor's examination, Emily slept the entire time. They explained Emily's symptoms to the doctor who immediately diagnosed narcolepsy with cataplexy.  He did not have any experience treating these conditions. 


Cataplexy is a sudden loss of muscle control which can be brought on by emotions. Her cataplexy can range from slurred speech to complete muscle loss making her unresponsive for up to 3 minutes. Due to the cataplexy and narcolepsy she will never be permitted to operate a motor vehicle. Emily now suffers from sleep paralysis, nightmares, automatic behavior, depression and anxiety.


 Furthering her troubles, her pediatrician thought it was best that Emily not attend school until she could stay awake for at least 4 hours at a time. Her family met with her school and discussed a plan for Emily to keep up with her schooling. Due to her learning disability, home schooling was not an option. Special consideration was given and Emily attends (after) school 3 days a week for 2 hours.


 After sleep studies, blood testing, and several medical trials that caused life threatening results, Emily visited Motts Children's Hospital in Ann Arbor Michigan to see a specialist:  Dr Hoban, and his team. He conducted genetic testing and found that Emily carries the narcolepsy gene. Few people that carry the gene develop narcolepsy. 


By this time Emily was in 8th grade and at the recommendation of Dr. Hoban, they decided to try the drug "Xyrem" again in small doses. She has been responding well other than the typical side effects of stomach upset and headaches. Xyrem puts her in a very deep sleep and a CPAP machine is necessary. 


Emily just finished her freshman year of high school. It is most difficult for her, but despite her learning disability, narcolepsy and cataplexy she still makes the honor roll with A's and B's.


 We are trying to raise money for a service dog, training and equipment to help Emily. Having a service dog for Emily will change her life. Her dog will be trained to wake her up for alarms: fire, medication and medical emergencies. A service dog will also stabilize her during a cataplexy attack and keep her safe if she were to collapse in public.


Thank you for taking the time to read Emily's story, and thank you advance for your consideration and support.