By Mindy and Howard Manka
Our son Parker was diagnosed with narcolepsy with mild cataplexy on August 1, 2013, at age 10. This was by no means a quick and easy diagnosis. He started showing symptoms in May 2011. We went to countless doctors and specialists, and he underwent tests, blood work, EEGs, x-rays, and numerous other procedures that led us to a dead end, still with no answers and no idea what happened to our little boy.
Parker was a happy, typical, youngster who loved to be outside playing with his friends from morning til night. We were gearing up for another adventurous summer when Parker came down with strep throat. He took the normal antibiotics, and though the strep throat cleared up, he changed.
He began sleeping all day. It was hard for him to stay awake long enough to eat a meal. School was out for the summer, and his friends were out having a ball, but Parker just couldn’t wake up to go play. He stayed in, sleeping.
That brought on all the obvious questions any parents would have. So we started with a trip to the pediatrician, the beginning of our 2-year 3-month journey.
When Parker finally received his diagnosis, we all gained a sense of relief, but this was overcome quickly with new fears. Fear of the unknown as we started to learn and research everything we possibly could about his condition. It was in that research we found Wake Up Narcolepsy.
The people at WUN, especially Monica Gow, whose teenage son Thomas also has narcolepsy, knew what we were going through and made it their mission to help. WUN is the leading organization working to raise awareness and provide research funding to find a cure and shorten the time between symptom onset and diagnosis. They have also been a huge blessing to our family.
What seemed like a hopeless situation for us Mankas turned into an opportunity to educate others, raise awareness, and become an advocate for narcolepsy sufferers everywhere. Not only for our son Parker but for 1,000s of others who struggle everyday with this life-altering condition. It is with that same sense of enthusiasm that we decided to organize the first annual Extinguish Narcolepsy Golf outing, which was held recently, on May 10, here outside Chicago.
We received support from Wake Up Narcolepsy, Nicole Jeray, a professional golfer on the LPGA Tour who has narcolepsy, Jazz Pharmaceuticals, Kia Motors, and Teva Pharmaceuticals, along with many other companies and individuals that donated, gave items for the auction, and sponsored golf holes.
Our tiny little fundraising idea turned into something much larger and more wonderful than we imagined. When it was all said and done we raised nearly $50,000, which is amazing for the first year of an event like this!
We are looking forward to many more fundraising events and opportunities to raise narcolepsy awareness. No idea is too small, and we encourage everyone to be an advocate and educate anyone that will listen. Together we can make huge strides in awareness, the first step in speeding diagnosis and finding a cure!