For most people who toss around the phrase, "You don't know what you've got until it's gone," it's usually because they're disappointed with what's left.
Then there's Jen Little. Little has every right to be despondent. Yet she's not, because she knows what she's got, even after many other things in her family's life have gone.
She's got her husband, Jona, and 17-year-old son Jade and 4-year-old son Jaxon. And she's got her 5-year-old son, Jazz.
"This last year has really opened our eyes to what's important in life," Jen said. "It doesn't have anything to do with the material things. Jazzy has really showed us that."
On Sunday evening, Jen will take to the Strip with more than 30,000 runners to compete in the Zappos.com Rock 'n' Roll Las Vegas Marathon and Half-Marathon. It will be one of the last things she does as a Las Vegas resident. And she will be doing it to continue the fight for Jazz's life and the 1.4 million other Americans diagnosed with Crohn's disease.
Five years ago, the Littles moved from Seattle for Jona's new job. A family friend was opening a sheet metal business, and both of Jen's brothers and her sister also moved here with their families to join the company.
It was a bright time, to be sure. The business got off to a great start, and Jen and Jona made plans to have their first house built. They moved into their home near Centennial Hills in May 2010.
But just six months later, the hardships began to mount. The sheet metal company succumbed to the rough economy. That left Jona without a job.
"Because of that, we lost our health insurance," said Jen, 36. "We went through our savings and sold off everything we could. And in the interim, Jazzy got sick."
That was in June 2011. For the first time, Jen and Jona had taken a trip by themselves, leaving the kids in the care of Jen's sister while they went back to Washington to surprise Jen's mother for her birthday.
"I got a call from my sister the night before we came home. She was in tears and said something was wrong with Jazz," Jen recalled. "She put him on the phone, and he was hysterical. He said his legs hurt and he couldn't move them, and he wanted us to come home."
Jazz was able to hang in, meeting his parents at the airport when they returned the next day. But the following morning, he couldn't move his arms. And later that day, while Jen was at the job she had taken in the aftermath of Jona losing his job, she got another alarming phone call.
"Jona called me at work and said Jazz had gone to the bathroom, and the toilet was full of blood."
They took Jazz to the doctor and ran a battery of tests, for E. coli and other potential digestive issues, and when a cause couldn't be discovered, it was quickly recommended that Jazz see a pediatric gastroenterologist.
That sent Jen's mind racing, and she did a little of her own research, typing in Jazz's symptoms on Google.
"All the symptoms in our online searching pointed to cancer," she said.
On appointment day, they anxiously sat in the waiting room, watching other parents get good news and hoping for the same.
"The doctor came out and asked us to go out into the hallway. So I was really worried," Jen said. "I just blurted out, 'Does he have cancer?' And the doctor said, 'No, he has Crohn's disease.' "
But there was no relief in that diagnosis. Jen was well aware of the effects of Crohn's, an inflammatory bowel disease. One of her uncles was diagnosed with it when he was in college, and though he successfully fought it off and has managed it ever since, the disease is life-threatening.
"For me, I was so upset when the doctor told us, and Jona didn't understand," she said. "I told him that there are cures for some cancers, but there is no cure for Crohn's. It's an incredibly debilitating disease."
And one that is talked about in hushed tones, if at all. With the 1.4 million Americans who have been diagnosed, there are likely many more who suffer from it but are embarrassed to get it diagnosed.
"It's an embarrassing disease. People don't want to talk about Crohn's," Jen said. "But it affects millions of people directly and indirectly, and it needs to be talked about."
PAYING MORTGAGE VS. MEDICINES
It's been at the forefront for the Little family for the past 18 months.
"Jazzy got so bad that at least once every two months, he was in the hospital for four, five, seven days at a time. He wouldn't eat, he had no energy, and he couldn't get out of bed," Jen said.
Jona was still out of work, so the family was relying on Jen's job, which had become tenuous.
"I was spending more time at the hospital, and my employer understood. They did everything they could to help me, but they couldn't keep up with the work. We mutually agreed that I'd leave my job. I couldn't give to work what I needed to."
So just as medical expenses were spiraling, the Littles had less means to handle them.
"It came down to paying the mortgage or paying for Jazzy's medicines. Of course, it was a no-brainer for us," Jen said.
A few months ago, Jazz began a new treatment plan that included infusions of Remicade. It has proven effective, giving Jazz more energy than he has had in a long time, but at a tremendous cost.
"Every time Jazzy goes in for infusions, every six to eight weeks, each infusion is over $12,000," Jen said, noting that doesn't include the doctor's fee or the time in the intensive care unit.
A few days after Sunday's race, the family - which has grown to love this region and the people in it - will move back to Washington, where Jazz will have more long-term medical options available, and where Jen and Jona will continue to seek a more suitable work situation and, more importantly, a job that provides insurance for Jazz.
'THERE'S NO GREATER PURPOSE'
Despite the weight of the financial burden, Jen and Jona remain focused on any and all positives they can derive from the situation, and on doing all they can to help Jazz overcome his disease.
Jen found a huge release several months ago in learning about, then signing up for, Sunday's half-marathon. As it happens, the Rock 'n' Roll Vegas event's main charitable beneficiary is the Crohn's and Colitis Foundation of America, and the event features the Team Challenge, which draws more than 2,000 runners from around the country, competing to raise money to fight Crohn's and colitis.
Jen took it as a personal calling and has raised $2,500 for the foundation, which has generated $13.8 million in its four years as the benefiting charity of the Rock 'n' Roll Las Vegas event.
"People say to me, 'Wow, that's amazing. You're raising money for CCF when you can't pay your own medical bills,' " said Jen, who raised an additional $3,500 for CCF at a charity walk earlier this year. "To me, it's for a greater good. This foundation is doing research to come up with a cure to save my son or save others.
"I believe Jazzy was picked to have this disease. He has a job and a purpose in his life to make people aware of the disease. To me, there's no greater purpose. I believe we will find a cure, and others won't have to suffer the way we have. I have to focus on the positive and move forward, because that's all I have."
Jen and Jazzy have both stayed positive, perhaps most of all through the weekly training sessions with all the other local Team Challenge members. Jazzy has been designated the honored hero for the Las Vegas Rock 'n' Roll event, and he has been a huge hit, drawing hugs and high-fives while motivating runners at the training sessions - even at the first session, back in July, when neither Jazz nor Jen knew any of the fellow team members.
"He said to me, 'Mommy, I didn't know so many people loved me,' " Jen said.
He will surely feel more of the love come Sunday night. Jazz had complained that after providing so much moral support, he wasn't going to get to run a race of his own. So his mom and race organizers got together and worked out a plan: at the 12-mile mark of the half-marathon, Jona will meet Jen and hand off Jazz, and mother and son will cover the final mile together.
"I get to run the very end, and I get a medal when I'm done," Jazz proudly proclaimed.
Mom will surely fill with pride, and probably some tears, too.
"To hold his hand and be able to cross the finish line with him will be a once-in-a-lifetime, never-forget-it kind of experience," she said.
Then it will be back to the reality of Jazz's fight against Crohn's, which is far from over. It's a fight that has taken many things from the Littles, but Jen refuses to dwell on that.
"After the last treatment, we are close to a half-million dollars in debt in medical expenses. It's just money, though," Jen said. "There was a time when I was really struggling with everything this had done, but now, none of it matters. They can have my house, my car, all my stuff. The fact that I have a 5-year-old boy running around, being a normal kid they can have it all, because I have Jazz."
Contact reporter Patrick Everson at firstname.lastname@example.org or 702-383-0353.