Just before New Year's, an army wife from Colorado named Melissa Klein passed away at just 21 years old. She had made headlines weeks before for her campaign to raise $10K to undergo experimental treatment for the incurable, rare genetic disorder (mitochondrial neurogastrointestinal encephalopathy, aka MNGIE) she suffered from. The sad reality is that the treatment -- which aims to repair the molecular defect that causes her condition -- hasn't been approved by the FDA, so it wasn't covered by Melissa's insurance. For now, it is only being offered in London to those who can pay over $6K a month.
When a story about Melissa ran on Gazette.com, people rushed to donate, and within hours, she had surpassed her $10K goal. One man said he'd donate $1K and pay for the couple's airfare to and from London. But Melissa wouldn't make it overseas, dying on December 27 from complications following surgery to remove a port in her chest that had become infected, her husband said.
Her husband, Spc. John Klein, a soldier assigned to Fort Carson's Warrior Transition Battalion due to injuries sustained in Afghanistan in 2011 when his vehicle struck a roadside bomb, explained:
Her heart stopped three times. She was resuscitated. She was asleep through all of it and it was just going to keep happening and the time between resuscitations was just getting shorter. ... The fourth time her heart started to stop, I told them to just let her go. I sat with her until she was gone.
John says that he feels like now his wife "doesn't have to suffer anymore, doesn't have to feel that pain anymore, and I'm kind-of happy for that, but she will be missed by a lot of people."
My fingers are crossed that her story is one that will make people take note of her rare genetic disorder and similar that are considered "orphan diseases" that fall by the wayside in the fields of research and treatment. Real people like Melissa are suffering from conditions that the medical community has turned their backs on, because "too few" people are suffering from them. But how many is enough? What will it take to make treatment available to them? Isn't it time we pay attention? It's so wrong to think that in the year 2014, someone like Melissa was being forced to go to such extremes to get the treatment she so desperately needed ... and that she lost her life when it had really only just begun. We can do better.
RIP Melissa ... I'm sure she will be missed not only by those who personally knew her -- but by others who've been affected and touched by her heartbreaking story.
What message would you want to pass along to Melissa's husband and loved ones?
Image via indiegogo.com