It’s a rare 13-year-old that is eager to get up early, much less pre-dawn. Not so for Ben, who was awoken in the dark of the early morning in order to see something he had been dreaming about: watching Uluru, also known as Ayer’s Rock, change colors in the dawn light.
When the time came, he could not take his eyes off it, even for a moment. Says his mom, Shelley, “We’ve always known Ben’s body houses an amazing soul—but seeing this 13-year-old so fulfilled by something most kids his age just don’t have the capacity to appreciate helps us understand how he seems to manage his debilitating body with such grace and optimism. Once again he showed us things we would never have even imagined without him.”
Living with Duchenne’s muscular dystrophy means Ben’s world can “get pretty small” says Shelley. He will start to climb stairs, and then have to crawl until his older brother throws him over his shoulder and bounds up the rest of the way. And he was excited to finally be taller than his young brother after a recent two-inch growth spurt. But the rapid growth also weakened his muscles.
Having been not well enough to attend school meant missing the entire basketball season—something he dearly loved. But once he found out he would be getting a wish he was “floating on air” says Shelley. He surprised them all by revealing that his wish was to go to Australia to see Uluru. He would stay up so late reading the guide books he got from his wish grantors that his parents would have to take them away from him to get him to sleep. And he kept exclaiming, “Mom, I am SO LUCKY!!” On the night before his wish, however, getting to bed wasn’t a problem. His parents say he disappeared after dinner and “we found him trying to go to bed at 7 so tomorrow would come faster…”
Says Shelley, “The fact that he got to have this magical once-in-a-lifetime opportunity at the same time that he is facing losing the ability to walk is such a tender mercy.”