RIDIN' STEEL

RIDIN' STEEL

MILES FOR SMILES -MOEBIUS SYNDROME AWARENESSS

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Saturday May 30, 2020 9:00 AM - 8:00 PM

posted by RIDIN' STEEL

Hosted by Red Knights ME VI

Johnstone Supply

195 Thatcher St, Bangor, Maine 04401

 

Our ride will start at Johnstone Supply, 195 Thatcher St., in Bangor, and conclude at Angler's Restaurant 91 Coldbrook Rd, in Hampden.

 

 

Moebius Syndrome: Harper Wing's Fight

 

Harper was diagnosed with a very rare neurological disorder, called Moebius Syndrome. Moebius syndrome is present at birth. It primarily affects the 6th and 7th cranial nerves, leaving those with the condition unable to move their face (they can’t smile, frown, suck, grimace, or blink their eyes) and unable to move their eyes laterally (no peripheral vision). Harper also has skeletal involvement including corrected bilateral club feet and Poland Syndrome, as well as decreased muscle tone and strength.

Every two years we try to attend the Moebius conference where we can learn more about medical care, as well as meet peers and families on the same journey. A big goal of ours, is to one day in the near future, give Harper the option to smile on the outside, should he want it. Smile surgery is a possibility for Harper; however, it is a very extensive and costly procedure.

 

Spreading awareness, and creating an environment of acceptance, is our ultimate goal by sharing this day with you!

Harper is a local Kindergarten student who loves hockey, swimming, and has quite the sense of humor! Most notable, Harper is kind and caring with a generous heart. While he may not show a smile on his face, he is certainly smiling with his heart!

We don’t want his diagnosis to be a hindrance. We want him to embrace it, love who he is, and be a better person for it. We want to teach him to believe in himself so strongly that the world has no other option but to believe in him too!

 

Erika and Zachery Wing

 

 

Even if you cannot join us in the ride, please dine with us at Angler's in Hampden. From 2 PM until 8 PM, part of the dining proceeds will be donated to the "Miles For Smiles" event.

 

Coffee and donuts will be available at Johnstone before the ride.

 

Registration Begins: 9:00 AM

KSU: 11:00 AM

 

Dining at Angler's - Hampden: 2:00 PM - 8:00 PM




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