I learned recently about a rare disease called Hunter Syndrome; it’s a degenerative disease that leads to what doctors describe as “childhood dementia.” It came to my attention because of remarkable news: a 3-year-old boy had received the world’s first gene cell therapy to treat it and it appears to have removed all markers of the illness.
When I read about the illness, I was struck by this: “Also known as mucopolysaccharidosis type II (MPS II), this syndrome is caused by a faulty gene that prevents the body from producing a vital enzyme.” The very process of him being formed—his actual creation—and a rogue gene is what led to his circumstances. His brother also has the illness, but was too old for this gene cell therapy and is in another medical trial in the U.S.
I am staggered at how complicated it is for a healthy human body to form, and yet it happens regularly. To read about Hunter Syndrome is to be reminded of the intricacies of the creation process and the seeming randomness of a gene that does this instead of that, and creates life-altering changes.
My mom never understood why people drank to excess or smoked: They were born with healthy lungs, healthy liver. Why ruin that? Why make your body suffer? There are people who would kill to be healthy. She said this throughout my life, which is probably why I’m a teetotaler now. But it’s true; to see stories of what one rogue gene can do and to recognize your own privilege if you are experiencing a healthy life…a healthy life is miraculous. It’s something to be thankful for. (And if you have the privilege to age, it is something that will not last).