Jourdin Rust, 8, of Emporia began the 2014 school year as any normal child would, filling his free time with sports and enjoying time with his older brother.
As the school year progressed and he delved further into sports, his family began to notice weight loss. Initially, it was attributed to a combination of an active lifestyle and his adolescence.
“He would eat like a horse, but we couldn’t get him to gain any weight,” said Nichole Rust, Jourdin’s mother. “We’ve been questioning for a very long time why we couldn’t get him to gain weight. He went on a growth spurt and he actually started losing weight, but it was kind of a gradual progression over time, and it was really starting to be evident around Christmas time last year. We were starting to get more and more horrified knowing that he was losing more and more weight, knowing that there was something more severe going on.”
Nichole explained that even Jourdin’s teachers voiced concern with Jourdin’s emaciated condition. Jourdin went from being a very active seven-year-old to coming home and sleeping from the time school got over until the next morning. He complained of aching legs as they walked through the grocery store and always ended up riding in the cart.
After many doctors brushed off Jourdin’s developing issues, the family finally found one that suggested lab work be done.
“On Jan. 19, we got his labs done and we just figured after we got his labs done we’ll just head out of town and do something fun. He’d never had labs done before,” Nichole said.
The only other time Jourdin had been in the hospital was when his grandmother died, so Nichole was prepared for him to expect a very troublesome time when there.
The family traveled to the Flint Hills Discovery Center in Manhattan following Jourdin’s trip to the hospital. After only a short time there, they received a call asking them to return to the hospital as soon as possible.
“When we got to the hospital, my blood sugar was 235 or something, and then when we got to the hospital, it was 700,” Jourdin recalls. “Before I was in the hospital, I couldn’t gain weight and I was really unhealthy and I was dying.”
What began as an overnight stay turned into a 10-day hospital stay, during which he was diagnosed with Type 1 Diabetes.
About seven days into his hospital stay, the doctors told Jourdin that he would need to do an MRI in hopes of getting more answers; the team of doctors wasn’t convinced that diabetes was the only problem.
“The MRI was painful because they had to put an IV in my hand,” Jourdin said. He then explained that getting an MRI was like laying in something that looked like a donut and made a lot of noise.
Three days after arriving home, he received another phone call with a second diagnosis: Addison’s Disease.
“Most people know how to handle cancer, and what the process is that you do. We were kind of in unchartered territory with what we do because we were thrown diabetes, which is challenging in itself … and then Addison’s Disease,” Nichole said.
Addison’s Disease is a disorder that disrupts the secretions from the adrenal gland, especially that of cortisol, and can lead to fatigue, weight loss, low blood pressure and low blood sugar.
When asked if he was ever in pain, Jourdin said, “When they took my lab draws, yes.” He noted that it “cut out the pain when they used a special cold spray.”
Jourdin has now had 25 lab draws.
Following an appointment in June, the family received yet another diagnosis. Mitochondrial disease is a rare disease that tends to affect children more than adults, according Cleveland Clinic’s webpage. The webpage states that symptoms can fluctuate with the disease over time, but often include autism-like features, poor growth, muscle weakness and exercise intolerance.
Although the family now has names for Jourdin’s conditions, they are still trying to figure out what it all means and how to manage it. Nichole has relied on her family and her faith to get through the year of watching her son go through this.
“He is doing a lot better. Therapy has helped as well,” said Nichole. “He played baseball this summer and he loved it.”
Jourdin has grown six inches and gained 29 pounds since January.
The family has developed a Facebook page, Jourdin’s Journey, to give outsiders a glimpse of Jourdin’s day-to-day. A GoFundMe fundraising webpage has been set up for the family and can be found at gofundme.com/8w23j73s.