NARCOLEPSY: NOT ALONE takes over the French Alps!
Say HELLO to Ben who shares a monumental message of hope and narcolepsy awareness from 5,800 feet in the air. Thanks to Ben, NARCOLEPSY: NOT ALONE is now inscribed on a scenic snow-topped mountaintop in the French Alps, along a popular chair-lift route for every single ski resort visitor to see until the next snow fall!
Behind this mega-awesome message is Ben, my dear friend and an 11-year-old who developed narcolepsy at age 5, after receiving the Pandemrix vaccine in Ireland. I stayed with Ben and his amazing family last week during my trip to Ireland before they departed for a family ski vacation.
While skiing, Ben and his dad had the idea of inscribing NARCOLEPSY: NOT ALONE onto the mountain-side… But how? It would take a lot of time and coordination… Maybe too much effort?
But Ben was determined…..
“I thought it was a great idea and eventually convinced my Dad and his friend Terry to help me,” Ben explained.
“It was a lot of work but it was a team effort! Terry told me and my dad where to go and my dad and I made the letters in the snow. I knew it would have to be BIG so people going past couldn’t miss it! I always want to raise awareness for NARCOLEPSY and honor all my friends with narcolepsy around the world.”
Receiving Ben’s photos today made me laugh out loud, smile from ear-to-ear and yes, sent tears streaming down my face. Narcolepsy can be a terrible monster at times, but then, perhaps when we least expect it, we find new strength, determination and connection along the way. We discover our “narcolepsy family” and sometimes, if we’re lucky, we find ourselves standing taller, smiling bigger, laughing deeper and living life just a more awake than we ever imagined.
Precious moments like this one is something I hold onto with all my heart and soul, because this helps me, Julie Flygare, face my narcolepsy monster eye-to-eye with renewed patience, self-compassion and strength. Seeing Ben spread his arms in this photo, I can almost feel his strength and vulnerability delicately balancing across his wingspan. I can feel that I am there, high in the French Alps, and that I am loved and supported by amazing people around the world.
I’m so honored and grateful to Ben, the Blackwell family and my amazing narcolepsy family everywhere who are sharing this journey with me and helping make the future of narcolepsy shine a bit brighter.
Read more about my wonderful trip to Ireland in March 2016!
Wayyy to go Ben!!! That is an amazing tribute!! I don’t know you, but I am so proud of you!!!! This sleepy/wake stuff is so annoying. But what you just did teaches others to stay positive and do incredible things !
Very, very cool…..literally…ha ha!!
Keep on dreaming big dreams and making them happen!!
You are a JET, Julie, truly in so many ways as the lyrics rhyme the theme song of West Side Story. I’m sending you some realtime videos from a series of futuristic research that by 2020 it is thought that diseases like Narcolepsy will be diagnosed correctly. In simple terms, correctly meaning our individual biology will be known, for the Doctor to diagnose exactly what will and will not work to help us . One lecture is about studies being done in county Cork Ireland by Dr. Cryan. He is working on creating the Macrobiome testing that reveals what works and does not work. Every medical provider we would go to will require that test be done before treating us. I hope to send it Saturday.
Warm regards, Arnold