For those unfamiliar with it, mucopolysaccharidoses (MPS) is a wicked, wicked disease. It comes in a couple of different forms, but the form one little boy lives with is MPS II, or Hunter syndrome.
Hunter syndrome is an inherited disorder; however, many parents don’t even know they are carriers of the disease, let alone know that the disease even exists.
MPS manifests itself in the body, building up huge amounts of harmful substances that begin to cause all kinds of damage; the damage is progressive, as well as permanent.
One blogger, who goes by “Wesley’s Mom,” tells readers the story of her son named—you guessed it—Wesley. Wesley is five now and is in and out of the hospital with aches, pains, seizures, and a vast amount of other painful symptoms. Sadly, there’s no cure for the disease, and what’s even more heartbreaking, children with Hunter syndrome typically don’t live to be older than 10.
In one blog, Wesley’s mom writes about the “ugly question”—the question many people ask children with special needs without thinking of the way it might make their parents feel:
“What do you want to be when you grow up?”
On her blog, Wesley’s mom describes the rage, the fury, and the heartbreak of that question. Because, more than likely, Wesley won’t get to be when he grows up.
Wesley doesn’t know his fate, and that’s exactly the way his mom will have it.
But that doesn’t mean their family will lose hope. So instead of the “ugly question,” here’s the question Wesley’s mom hopes (begs/prays/pleads) her son will be asked one day:
“What did you want to be when you were LITTLE?”
Wesley’s family has set up a GoFundMe account to help with the expenses of raising Wesley. Click here to show them some love.
