Diseases, drugs and now...a cure

I actually have some good news to share on the Andrew being sick front!
Some of you already know about my brother, Andrew, and his diseases, but I'll give a brief overview for those of you who don't.

Typical teenage boy, so NOT enthused.

Andrew was born with Chronic Granulomatous Disease (CGD), the same illness that my older brother, James, who died in 1988 had. CGD tends to run in families although it is VERY rare. It's estimated that only 1 in a million people have it. Andrew's taken medicine for CGD his whole life and been hospitalized many times over the years. He knows what it's like to be a human pin cushion very well--I couldn't even guess how many times he's had blood taken.

At the end of 2008, we found out he also has Celiac Disease, which means he can't eat anything with gluten in it (i.e. anything containing wheat). Thankfully, living in a major metropolitan area, we can find good gluten free food pretty easily. Pizza Luce, one of my family's favorite restaurants, even has an excellent GF menu. They justifiably advertise as Minnesota's Best Pizza. So, Andrew adjusted to his new diet, gained a lot of weight and grew like a weed.

Then over a year ago, he started complaining about his gut hurting. It just got worse and worse, he could barely eat and lost a lot of weight. There were a bunch of open sores in his mouth. The doctors found out his intestines were very inflamed and diseased. Pretty much from his mouth all the way through to his anus, he had inflammation and ulcers. One doctor said that Andrew should have been rolling around on the floor screaming, that's how bad it was. He was diagnosed with Inflammatory Bowel Disease (IBD), and his main doctor referred him to the National Institute of Health (NIH) in Bethesda, Maryland.

CGD is rare, but Andrew's doctor is the world's authority on it and sees many patients with it at Children's Hospital here in Minneapolis. Andrew isn't her only patient having stomach and gut issues either. NIH is interested in studying these patients, because they're presenting similar symptoms. People with CGD used to not live very long, but now with medical advances life expectancy is much longer than it once was. The researchers are curious if these gut issues are a symptom of CGD or caused by the life long use of the drugs taken to keep healthy.

So, Andrew and my Mom have flown out there several times now since this summer, and he's been getting different drugs to help with the inflammation in his gut. The awesome thing is everything is paid for, it's cutting edge research, so my parents don't have to try to figure out how they're going to afford all the expensive drugs Andrew's taking. He's slowly gained a tiny bit of weight, although his guts are still messed up.

The most exciting bit of news is that a cure for CGD has been discovered! We'd heard years ago of bone marrow transplants being a possible cure, but at the time it was way too risky and dangerous, with a very low success rate. It was not something to be considered except as a last resort.

They have now successfully done bone marrow transplants for many CGD patients with great success! Another young man with CGD from Minnesota actually just had a transplant this past summer at NIH and is now cured. My parents have decided to move forward in the transplant process after much investigation and prayer. We've known about this since the summer, but were waiting to see if a matched donor could be found before we started sharing about it. The best donor is a sibling, because they're more likely to be an exact match.

My sisters and I had our blood drawn, but that didn't get done right. So then we did cheek swabs...which weren't the right size for the testing machine. We did the swabs again with the correct sized ones this time. We just heard back yesterday: I'm a PERFECT match for Andrew!! And apparently Leah and Hannah are exact matches to each other, so they know who to ask if either of them ever need a kidney.

We're hoping to do the bone marrow transplant next summer out at NIH. Thankfully, they will not need to hack into my hip to harvest the bone marrow. I'll write more about what I'll have to go through as I get more information. Even if they had to break my leg, I'd do it anyways. Andrew will be cured of CGD! Even five years ago, we couldn't have fathomed that there would be a cure.

For those of who have been praying over the years for Andrew to be cured, thank you. God has answered your prayers for a cure. I like to say, sometimes the Lord heals in miraculous, spontaneous ways, and other times He works through the knowledge and expertise of gifted doctors. It's amazing either way.