Two of David Smith’s children have the same genetic disease, but a bone marrow transplant may help or even cure the youngest of the two. A fundraiser has been set up on the website Giveforward.com to help with Jacob Smith’s bills and expenses while staying in Bethesda, Md., for the treatment. According to David, who lives in Mentone with his wife, Amy, his sons Justin, 28, and Jacob, 26, were diagnosed with the rare genetic condition Chronic Granulomatous Disease about 25 years ago. “They were actually diagnosed at about the same time because they didn’t know what was wrong with these two boys when they were babies. They kept getting ill all the time,” David said. He said the disease makes them prone to common fungus and bacteria. “If they were around farms, they would pick up aspergillus fungus in the air,” he said. “Any time you’re around hay barns, cattle barns, pig barns, farms like that, aspergillus is present everywhere. It’s even in the grass and the leaves. It’s a very common fungus. And they would get it from the air and it would start growing in their lungs and they would get coughing, and the next thing you know we were in the hospital.” Everyone takes in some of the fungus in their lungs, he said. An average person’s body has the ability to fight it, whereas Justin’s and Jacob’s bodies do not. “My oldest son (Justin) has already had a third of his right lung removed. He had part of his lung removed when he was about 4,” David said. “He’s doing pretty good (now). He’s very thin, but overall he does pretty good considering he’s got about 1-1/2 lungs.” Jacob had his own share of problems when he was younger. He didn’t seem to have lung problems as much as Justin, but in recent years, David said Jacob started having bouts with it. “There’s just a ton of things that happen with CGD. For example, when a teenager goes through adolescence and have to worry about acne, it’s so much more severe for kids like my kids, because that’s all bacterial and that’s what they have a problem with, is fungal and bacterial stuff,” David explained. The basic problem is that his sons’ white blood cells don’t work properly, David said. As for Jacob’s condition now, David said, “He’s had some fungus in his lungs over the last six months to a year. His biggest problem is that the lining of the chest cavity where the lungs stick to, he’s losing the ability for his lungs to stay expanded. They’re collapsing, and he’s had collapses lungs probably at least four times in the last year.” Jacob’s lung capacity is about 35 percent, David said. “They’re worried that if he keeps going on this downward trend, he won’t make it. Without the bone marrow transplant surgery, it’s not looking very promising.” Like the procedure done with a Leukemia patient, David said in the bone marrow transplant, “They’re starting over and what they’re hoping to do is, he has to go through chemotherapy first where they kill off the body and start with new blood. They’re hoping that, obviously if it takes, then the white blood cells will be effective white blood cells. It’s a last-ditch effort to cure these boys, but what they have is considered a genetic immune deficiency. They were born with it, so to cure something like that almost is weird science.” The procedure still has an 85 percent success rate. “We’re really surprised that it’s that high,” David said. In the last five to 10 years, he said they’ve made a lot of progress with these kind of procedures. “A lot of the earlier children that had this done developed a donor-versus-host condition which is basically the body rejecting the procedure,” David noted. He said they weren’t really excited about the procedure when it was first proposed for Jacob a few years ago because they figured he’d be worse off if his body rejected the procedure. However, the doctor at the National Institute of Health put a lot of pressure on them for Jacob to get it done now or he wouldn’t live to be 50. Originally, Jacob was going to Bethesda from Broken Arrow, Okla., in early November. Now, he’s scheduled to be there Thursday. They’re going to screen him, find out how his current health is and make sure he’s as healthy as possible before they start the chemotherapy. Jacob will be at NIH as a patient for a little while, but once he’s stabilized after the procedure to the point where he can take care of himself, Jacob will live in Bethesda so he can keep going in for follow-ups. “More than likely he’s going to be there about a year,” David said. Jacob is going to try to continue his college studies online to give him something to do while there. While the doctor, hospital and all the procedural parts are paid for by NIH, Jacob will have the extra expenses of living in Bethesda. Everything will add up. “That’s the main reason my daughter (Amber Martinez, South Bend) set that (fundraising website) up. To try to raise money to help for the extra expenses because he’s like any other typical college student. There’s always so many expenses being in college that he’s barely getting by a lot of the times. And that’s in a normal situation. In his situation, it’s even more so,” David explained. By setting up the fundraiser on Giveforward.com, the family wants the money to go directly to Jacob without a middleman. “Jacob and Justin are on daily medication every day. They basically haven’t stopped taking medication since they were toddlers,” David said. “... Jake and Justin have outlived most of their peers that had the same illness. Most of them aren’t alive today.” To donate, visit the website directly at http://gfwd.at/19olpag
