Connor Is Headed Back To NYC As His Condition Declines

This is why raising awareness of chiari malformation to the medical community is so important.    Each state should offer the same level of care and when a doctor hears the word 'chiari', they don't scratch their head and say "Huh".   Had the first neurosurgeon, who operated on Connor, known just how finicky chiari is...maybe Connor wouldn't be fighting for some sort of quality of life.  

Instead of staying in Maine,  Connor and his family have to travel, AGAIN, to NYC on Thursday.  Connor's incision continues to breakdown and is now swollen and possibly infected.  Erika, Connor's mom, said it could be from the brace rubbing or his body rejecting the hardware from the fusion.  Either way, it feels like the light at the end of the tunnel keeps getting farther away for him and his family.  He is not allowed to wear is brace until further notice. ..and that alone is risky.

Worse case scenario,  Connor has a 'do-over' surgery and instead of a brace, he'll have a halo.  This probably is the direction he's headed towards.   Or, maybe just fixing the infection and adjusting his current brace will fix this.  Whatever the case, we can all agree this poor kiddo needs a break.

THE LAST TRIP COST OVER $7000.  MOM IS PHYSICALLY ILL TRYING TO FIGURE OUT HOW TO AFFORD THIS TRIP.  PLEASE DONATE TO: www.gofundme.com/connorisafighter  NO PARENT SHOULD HAVE TO WORRY HOW THEY ARE GOING TO GET HELP FOR THEIR SICK CHILD.  IT TAKES A VILLAGE TO RAISE A CHILD...CONNOR IS OUR CHILD

Connor is my hero.  Everyone keeps commenting how well I'm recovering.  You see, I'm not sharing the bad stuff...how dare I even complain about a muscle spasm, when Connor is struggling so hard to conquer chiari.  It is my goal to make the word chiari familiar to everyone.   That is why Erika and I are organizing the Conquer Chiari Walk Across America walk on September 17th.  We will raise awareness to the public and medical community.   Click here to follow our walk and information about joining .  If you are a business and want to be a corporate sponsor for our walk...and get your business name printed on the back of the tshirt...click here and be sure to select the Central Maine walk.

Please continue to send positive energy to Connor and his family