BENEFITING: WAKE UP NARCOLEPSY INC
ORGANIZER: WAKE UP NARCOLEPSY INC
EVENT: 2015 Boston Marathon
EVENT DATE: Apr 20, 2015
My mom, Suzanne Rispoli is running the Boston marathon to find a cure for me.
Please read my story.
My name is Andrew. I was diagnosed with narcolepsy when I was 9 years old (2011) after many hospitalizations, spinal taps, and including many inaccurate medical diagnosis. I’d like you to understand my disease so I will tell you about my life.
I need to sleep several times during the day, sometimes for long periods. Even with medication, I am tired and weak and have a hard time focusing on school homework and daily activities. If I do not take my medicines 4 times a day, I can exhibit cataplexy which is a loss of muscle tone. This results in muscle collapse and sleep paralysis which makes me unable to move a muscle. I never really get a good sleep even though that is all I seem to do. I can have nightmares or night terrors which affect my sleep.
There is also an inability to move any muscle in my body while I am sleeping, but I can hear everything and am aware of those who are trying to get me up for school or dinner. I lose muscle control if I experience laughter, anger, anxiety or surprise which can cause me to drop to the ground into a sudden sleep. I can do homework, study, write and eat but may not remember having done them because I was sleeping awake.
My hope is to one day feel normal again. But there is no cure as of today. That can change with your donation to the wake-up narcolepsy foundation when my Mom runs for me and the money goes right to research.
The cause is still unknown. But It is thought to be from a loss of a particular chemical in the brain called hypocriten or orexin. Children and people with narcolepsy need to experience the normal everyday activities of others, like playing sports, enjoying school or being able to work.
My dream is to wake up one day without the feeling exhausted, being able to run and play sports, without feeling dizzy, to be able to laugh out loud without people staring at me when my eyes droop and start to slur my words, and really to just be WIDE AWAKE enough to not miss out on the memories everyone else is making without me.
Will you donate so I can one day be cured and be able to have those everyday things in my life?
Thanks for understanding and listening to my story.
Andrew Rispoli- 12 years old
(posted by Andrew's Mom, Suzanne Rispoli)
WAKE UP NARCOLEPSY INC wrote -
Narcolepsy is a serious, severely misunderstood and misdiagnosed medical disorder in desperate need of funding for research. The funds raised during the Boston Marathon Fundraiser will be donated directly to narcolepsy researchers trying to gain a deeper understanding about this serious medical disorder to improve the lives of people suffering with narcolepsy.
Learn more at http://www.wakeupnarcolepsy.org.