That’s a photo of my new nephew, Finnegan. Precious little nugget, he is. Don’t you think so? Sure you do, everyone loves babies. He was born on September 6th, 2011, which means that I haven’t even met him yet since Dan and I have been traveling for nearly 10 months now (Update: I met my sweet nephew in January!), but that doesn’t mean I don’t already love the sh!t out of him. Here’s the thing, though: Finn has MIC-CAP syndrome. What’s MIC-CAP syndrome, you ask? Never heard of it, you might say. I hadn’t either. Why? Because Finn is only the 10th child IN THE ENTIRE WORLD to be identified as having this disease.
That’s pretty freaking incredible, I know. You would think that in this day and age, our technology and giant human brains would have not only identified this disease long ago, but possibly even found a cure for it – or at least a combination of medicines to control it. But since MIC-CAP syndrome is so “new,” Finn’s doctors are just barely able to control the seizure activity that occurs in his brain every 10 seconds. Here are some other symptoms he experiences:
- Microcephaly – that’s small head size in doctor talk. (That accounts for the MIC in MIC-CAP.)
- Capillary malformations – those are little red dots on his skin. (Hence the CAP in MIC-CAP.)
- Impaired neurological capacity.
- Blindness.
- Deafness.
Being new parents and having a newborn baby is tough enough as it is: the sleepless nights, the new responsibilities, the extra expenses. Now imagine having a newborn baby with the symptoms I just mentioned: THAT’S APPROXIMATELY 9.7 MILLION TIMES HARDER. Finn literally requires 24-hour care, and medical treatment in the United States is absurdly expensive. So of course Dan and I want to help our little nephew . . . but how?
Here’s how: from now until January 1st, ALL (that’s 100%, my friends) of the proceeds from Dan’s music store and subscription site will go towards helping pay for Finn’s medical bills. Or you can simply DONATE any sum, large or small. Any amount will be appreciated.