HOUSTON — In just a span of a few weeks, Darin Moore went from being uncertain whether he would be accepted into a medical trial at MD Anderson to preparing for chemotherapy and the trial treatment. Darin has diffuse systemic sclerosis (scleroderma), a very rare autoimmune condition that gets more progressive over time.
Darin and his wife Judi Moore have now been in Houston for nearly a week, with Darin undergoing a variety of tests before he can begin the trial medication: bloodwork, chest X-ray,echocardiogram, EKG, and a pulmonary function test, Judi said. He also underwent three skin biopsies, to be used later on to see how his skin cells have changed after he’s completed the medical trial.
Because his test results did not come in at the expected time, Darin will begin treatment early this week instead of Saturday, Sept. 19.
On Monday, Sept. 21, the community is coming together to support the Moores in an event at La Caretta in Denham Springs. There will be live music, giveaways, a silent auction, and La Caretta is donating 20% of restaurant earnings during the event directly to the couple. The event starts at 4 p.m. and runs through 9 p.m.
Although they were originally hoping to be there in person, the Moores will have to stay in Houston. They’re hopeful they can participate virtually if internet access works out.
More information on the fundraising event can be found here.
“We’re so thankful for Everyone,” Judi told UWK. “it’s just been so amazing, and you know we look forward to you know Darin being well, and being able to pass this this blessing on to other people.”
Original Story Sept. 8
WATSON — Just over one year ago, a Livingston Parish couple had never heard of scleroderma and didn’t realize the kind of invasive impact it would soon have on their lives.
Darin Moore was diagnosed with diffuse systemic sclerosis (scleroderma), a very rare autoimmune condition. It’s so rare that his wife said that a person has a better chance of ever getting struck by lightning than having scleroderma.
“Most people have never heard of it, but it’s a very awful disease because basically, it shrink wraps you in your body, so your skin, your muscles, your joints all become hard. For some people, it goes then inside your lungs, your heart, your kidneys,” Judi explained.
There is no cure for scleroderma. However, the couple is pursuing all treatment options available for Darin. They’re hoping Darin will be able to participate later this month in a medical trial at MD Anderson in Texas.
Diagnosis
Before he began experiencing symptoms of scleroderma, Darin Moore served in the U.S. Army, worked as a personal trainer, and did regular work on his farm. He weighed about 215 pounds, with most of that being muscle. Now, Darin weighs under 170 pounds due to effects of scleroderma, Judi said.
His body is anemic from not properly absorbing nutrients.
It was just over a year ago when Darin began experiencing unexplained symptoms. His first symptoms included Raynaud’s disease where his fingers and toes would get extremely cold. He then started having pains in his wrists, which he thought could be carpal tunnel syndrome.
“But then he kept saying to me, “Judi, it’s in my feet too. And then he told me, “I can’t close my mouth all the way,” or “I can’t open my mouth some days all the way.” And then he started being extremely fatigued,” Judi explained.
Darin became so fatigued and tired, he couldn’t get out of bed very much. He lost around 40 pounds in a four-month period, and at that point, he was putting all of his symptoms into ChatGPT to figure out what might be happening. ChatGPT came back with an answer: scleroderma.
“One night when I got home after work, Darin had said, “Judi, I think I’m dying, and I have scleroderma.” I sent a message to our neighbor who’s a doctor and within a day, he had us with a rheumatologist, and that started the whole process.”
For Darin, the majority of his external body is affected at this point; his joints, skin, and face, along with his esophagus, and stomach. Judi is thankful that it hasn’t affected his heart, lungs or kidneys.
However, his body is frail and very thin. Darin now walks very slow and with a cane, his wife said. His hands don’t work as they should, and now he has issues with his mouth not opening up very wide.
He’s also finding it difficult to eat, not only because of the limited opening of his mouth, but because his esophagus muscles don’t work like they should. At this point, Judi said gravity is what helps her husband to eat.
Treatments & MD Anderson
Darin sees a rheumatologist in New Orleans and has been on medication to help treat the condition. Scleroderma, however, progresses quickly in men, Judi said. A New Orleans scleroderma and sarcoidosis center referred Darin to MD Anderson to see about starting a trial for treatment in Houston.
“So we went over there, and they told him he was a great candidate for this trial,” Judi said. “He was very excited because it’s pretty much taken everything from his life. We own a farm, and he can’t even really lift like the feed bags or do anything much anymore.”
However, the excitement that Darin and Judi felt was short-lived, because they soon received a phone call from the center.
“So we left there, and within about 30 minutes, they called him and said we made a mistake. You weren’t supposed to even be considered because we don’t take your insurance,” Judi recalled.
Because the center doesn’t accept Affordable Care Act marketplace insurance plans or Darin’s VA insurance, they told the couple they wouldn’t be able to see Darin.
“We were like, “Now wait a minute. We’ll come up with the money. How much do we need to pay out of pocket? Because basically, if he does not get this, then he’s looking at—I mean, this will kill him. This disease will kill him, and so we have been in the process of raising the money to do the trial.”
The Moores’ private insurance will be able to cover some of the trial costs, but they’re moving forward to raise as much as possible so that Darin can receive the treatment. He’ll be heading to MD Anderson on Sept. 14 to start the trial. He is one of just 65 people from across the country to be a part of this trial, they said.
“In Houston, he has to be in the hospital at MD Anderson for 10 days. He has to do the trial medication, which is one infusion. One infusion they told us is $30,000. Now everybody assumes that a trial is free. It’s not.”
Darin will need to be at the hospital for 10 days, but he’ll need to be in Houston for an entire month. This means that he’ll be in a hotel the rest of the time, along with Judi and family members who will swap out to stay with him in case of any adverse reactions. Food and travel expenses are also out of pocket.
Altogether, they’re looking at raising $100,000, Judi said.
They’ve already gotten some help from community members back from their hometown in Missouri, but still have a long ways to go.
“This just tells you the amazing thing that people can do. We went to our hometown this weekend, and our hometown is about 1,200 people—it’s a very tiny farm town, smaller than Walker—and they did a benefit concert there. They raised $12,000,” Judi said.
Now it’s Louisiana’s turn.
On Sept. 21, the community is coming together to support the Moores in an event at La Caretta in Denham Springs. There will be live music, giveaways, a silent auction, and La Caretta is donating 20% of restaurant earnings during the event directly to the couple. The event starts at 4 p.m. Sept. 21.
More information on the fundraising event can be found here.
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