Last hope for Melissa Klein: Fort Carson soldier's wife with rare condition seeks funds for treatment

By Erin Prater Updated: December 9, 2013 at 4:42 pm • Published: December 8, 2013 | 12:00 am 0

Melissa Klein's Christmas wish is simple.

She just wants to live.

Doctors don't expect the 21-year-old to make it past 30.

She'd be lucky to make it that long, she said.

Hearing her prognosis this year was "a shock, a huge shock," the 63-pound Klein said on a recent Saturday as a machine pumped a life-sustaining cocktail of life-fats, carbohydrates and proteins into a port in her chest.

The thought of dying "is terrifying," she said as she sat at a friend's dinner table, a plate of picked-at mashed potatoes and chicken in front of her. "I think it makes me angrier than anything."

Klein, wife of Army Spc. John Klein, suffers from mitochondrial neurogastrointestinal encephalopathy, a rare genetic disorder with no known cure.

Symptoms include hearing loss, neuropathy, nausea, vomiting, diarrhea, abdominal pain, extreme weight loss and reduced muscle mass.

Because she's too weak to undergo an experimental bone marrow transplant, her last hope is to travel to London for a different experimental treatment - erythrocyte encapsulated thymidine phosphorylase - designed to repair the molecular defect that causes the disease.

Because the treatment hasn't been approved by the U.S. Food and Drug Administration, insurance won't cover it, leaving the Kleins to raise $10,000 - $6,100 for treatment, plus travel expenses.

They're attempting to raise the money via Indiegogo, a crowdfunding website.


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The experimental treatment is designed to be administered on a regular basis.

Melissa Klein is only asking donors for enough to fund one session.

Perhaps a month of treatment would allow her to remember what "normal" feels like, if only for a little bit, she said.

"I want to try everything I can to prolong this terrible situation," she said as she looked out the window at snow as pale as her skin. "I want to go places. I want to see things. I want to do things."


About 70 cases reported

In high school, Melissa Klein was diagnosed with diverticulitis - bulging pouches found in infected or inflamed digestive tracks - after experiencing gastrointestinal issues. She had surgery to remove a portion of her intestine and adjusted her diet, eliminating foods such as seeds and popcorn that could easily rupture a bubble.

She underwent a couple of surgeries after that, including one that delayed her husband, Fort Carson-stationed John Klein, from deploying to Afghanistan.

After John Klein returned from the deployment in May 2012, the two went on a celebratory camping trip.

One morning, Melissa Klein woke up barely able to hear.

"It was like overnight, my hearing was gone," she said. "I woke up and couldn't hear anything."

An emergency room doctor referred her to an ear, nose and throat doctor, who referred her to a neurologist. The neurologist ordered an MRI of her brain.

The Kleins received Melissa's likely diagnosis via a letter from the neurologist, who recommended she confirm the diagnosis with genetic testing.

Melissa Klein was "elated."

"I finally had an answer," she said. "I Googled it, and every single one of my symptoms were there. I had been miserable since I was 16 with absolutely no answer at all, so I was relieved."

But as Melissa Klein researched the condition, her relief turned to uncertainty, worry, then dread.

Only about 70 cases of the disease have been reported, according to the U.S. National Library of Medicine.

She searched online for others with the same condition and eventually ran across the blog of a woman who had the condition, too.

That woman was dead.

The average life expectancy for those with the disease is 35, she learned. And she discovered that her life expectancy was even shorter.

"I don't have any more symptoms to go through," she said. "I have all of them. I'm just kind of waiting."


Husband faces challenges, too

John Klein faces struggles of his own.

He's finishing out his time in the Army in Fort Carson's Warrior Transition Battalion, home to the post's ill and injured soldiers.

John Klein was driving a vehicle in Afghanistan in August 2011 when it was struck by a roadside bomb.

He now suffers from a list of conditions including traumatic brain injury, headaches, vision loss, sleep apnea, short-term memory issues, anxiety disorder and bulging discs in his spine.

He battles unrelated ankle issues that require him to use a cane when he walks - "when I'm not helping her," he said.

"When I'm helping her, we stabilize each other. I lean on her wheelchair."


Quality of life fading

Like her energy level, Melissa Klein's quality of life is rapidly deteriorating.

Though she now receives all necessary nutrition via a port, she still vomits an average of three times a week. If her stomach is empty because she hasn't nibbled on food, she'll vomit stomach bile, her husband said.

She recently had plastic surgery to take in her drooping eyelids because the task of keeping them open was exhausting her.

"Sometimes I don't want to get out of bed," Melissa Klein said. "The past couple of days I've been feeling really bad. I've told John that I'd rather be dead than go through all of this."

Since launching her campaign Oct. 30, Melissa Klein has raised less than $2,000.

By the time she raises the money she needs to get to London, she might be too weak, or it might be too late, she said.

John Klein expects to be medically discharged from the Army soon. He's unsure of how much his monthly disability check will amount to and when he'll receive his first check.

Between his medical conditions and needing to take care of his wife, John Klein wonders if he can hold a job.

Even if he did, he wonders, what employer would let him depart for London for an undetermined amount of time?

"We're kind of coming to the conclusion that it probably won't happen," John Klein said.

"To raise that much money is going to take a long time. By the time we do, she might be feeling worse - and that would be really hard. It would be hard now.

"If everything falls together just right, it could happen. But even if it does, it's going to be very difficult."

When Melissa Klein started her campaign, she only thought of getting to London - not of what she might do if the treatment helped.

"Even if I get there and the treatment works, I don't think I'm going to be able to afford more months," she said. "So now it's like, 'Why am I even doing this?'"

If the treatment works and she receives it regularly, she may be able to extend her life by a decade or two, she thinks.

"I feel like it's worth a shot," she said. "It's a shot in the dark."

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