I see through the lies of the Jedi. I do not fear the dark side as you do. I have brought peace, freedom, justice, and security to my new empire.
Darth Vader (episode iii, Revenge of the Sith)
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| Race Director Jonathan Torchia awards a medal to Ethan. Photo credit unknown. |
Fifth grader Ethan has captured the heart of the entire WFPS Half Marathon 10k & 5k race community. Ethan loves Star Wars, particularly super villain Darth Vader. He also loves his 14 year old sister Jenna (aka Miss. Darth Vader ;) despite her relentless teasing - although I imagine Ethan holds his own against Jenna. All in good fun. Ethan is about as 'normal' a boy as you can imagine.
Except he's not.
Ethan has a rare condition called congenital myopathy unknown. His mom Lorraine explains.
He has muscle weakness. Normal things people do without thinking are hard for Ethan. Getting dressed, going up and down stairs, picking up his backpack, sitting too long, walking too long, all of it! Every day is a struggle for him just to get through the day. In addition to his weakness he has chronic pain in his back, neck knees, and feet which on some days is debilitating. Exhaustion plays a major role in his life.His outward appearance is strong. He looks well, acts, thinks, and speaks like any other 10 year old boy, but his disease can never be dismissed. "It is" says Lorraine "the elephant in the room". It nags incessantly and anxiety looms large at night between the sheets. Ethan's long term prognosis is tenuous but the family, especially Ethan, remain optimistic. This is a family that understands the power of love and optimism.
Ethan and his family ran the 3 km 'Shake Out Run' to commemorate the opening of the hugely popular 6th annual Fire Paramedic Run. The pain and discomfort Ethan experiences is symbolic of so many who struggle daily. These people are the true heros of our beautiful community.
The elite runners are gifted and we are grateful for their elegance and speed. We love the fast ones, but our community is about more than speed and personal bests. We are about love and inclusion. We accept all that have the tenacity and the courage to lace up and drag their butt to the start line. Through pain and struggle we run, wheel, walk over the sweet white line to cheers and tears.
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| L to R Wanda (family friend), Dad, Ethan, Mom, WFPS Run Ambassador. Photo credit Cheryl Stewart. |
Showing up is 80% of life. Sometimes it's easier to hide at home in bed. I've done both. Woody Allen, 1977, Annie
Today we were simply amazing.
Today we cried and laughed.
Today we danced over a line in ecstasy.
Today, as all days, we are grateful for the Ethans of the world.
Yes, Ethan is a hero, but so too are you. We persevere and we move forward. We accept what life has given us and we run happy. We show up when it would be so much easier to roll over and blissfully sleep away life.
I leave the last words to Ethan's mom, Lorraine.
Today we continue to fight. We fight for a boy with a rare muscle disease. Fight to get him the support he needs at school. Fight for others to understand, friends, family, teachers. Fight for the medical community to understand what it's like to watch your son struggle with strength, fatigue, and chronic pain. Fight for them to understand we often feel forgotten. Fight when they tell us our son is getting weaker. Fight when they tell us a day will finally come when he requires a wheelchair. Fight when they tell us his heart and lungs may become affected. We fight for E and we #staystrong. Always.
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| See Mike Run Photo Credit Junel Malapad |
It's a good day to be alive.
Mike
For more information on Ethan's condition click here.
