Making Wishes Come True for a Young Boy with ROHHAD

POW! BANG! KAPOW! On a typical day, Thor, Batman and Wonder Woman focus on purging the world of archenemies that threaten our very peace and prosperity. And the way things have been going recently, this trio of super heroes has been very busy.

But Global News Canada shares their softer sides, and for one small boy with ROHHAD, these super heroes made certain they were there to stand with him on a very important day.

Six-year-old Jaxon Garnier lives with a rare condition called rapid-onset-obesity with hypothalamic dysfunction, hypoventilation and automatic dysregulation (ROHHAD). ROHHAD causes healthy children to gain weight and have difficulties breathing, as well as other medical problems. A cure has not yet been found, and treatments often focus only on the symptoms. A ventilator and wheelchair are Jaxon’s constant companions.

However, Jaxon doesn’t let ROHHAD bring him down. He has big hopes and dreams. Recognizing that Jaxon doesn’t have a lifetime to realize all his plans, his mom encouraged him to create a bucket list of the things he wanted to do most. Mom then created a GoFundMe page. At the top of the list was “get married to Wonder Woman.” And with that, Jaxon started putting his plans in motion.

His proposal involved flowers (purchased with his own money), a Batman ring pop and an important question for Wonder Woman at a Show and Shine event. She, of course, said, “Yes.”

Thor performed the wedding ceremony. The best man was Batman. The bride wore a white lace veil and a fashionable dress emblazoned with a gold W. The reception was at the Sands Inn and Suites, and the proud mother-of-the-groom posted the newlyweds’ first dance on Facebook.

Everyone agreed it was an inspiring ceremony for an inspiring little boy. To see pictures and videos from Jaxon’s “super” wedding day, click here and also check out a piece in HuffPost Canada about it here. To help Jaxon check off other activities on his bucket list, click here.

Have you heard a rare disease story that has inspired you? Share your thoughts with other Patient Worthy readers.

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