Battle for benefits ends just before death for ALS patient

LAWRENCEVILLE, Ga. -- A few weeks ago, 11Alive shared the moving story of 42-year-old Melissa Kern.

She had been battling crippling ALS for almost a decade, and had reached a point where she could only move her eyelid to communicate. While she fought the disease, her husband Chris struggled to pay the bills, getting nothing from Social Security for disability benefits.

As we aired Melissa's story, our Bill Liss got directly involved with Social Security to press for those benefits. He finally succeeded. But as he did, tragedy unexpectedly struck. Yesterday, without warning and on her birthday, Melissa passed away. Her husband and 13-year-old son were nearby.

Melissa Kern fought bravely to stay alive. The family even built a special room for her so she could look out in the backyard and see the trees, birds and squirrels. Through the near decade of her fighting for her life, her husband Chris was at her side, fighting with equal resolve to pay all the bills.

For seven long years, he pleaded with Social Security to get Melissa her Social Security Disability Benefits--and for seven long years he was summarily turned down.

"I was told no--flat out ignored at every turn--it was kind of heartbreaking," he told 11Alive's Bill Liss. "It's been hard with someone who is so obviously disabled for them to deny it. A lot of times, not even to look at any of the medical records and things like that, because of one technicality. To deny it out of hand astonished everybody."

Most of all, it astonished us. It was all because of a technical glitch. Melissa had not spent enough months in the workplace.

Chris and her attorney insisted that Social Security closely examine medical records and not just time spent in the workplace. But it was no use. They got nothing. They sold their house and moved in with Melissa's parents. Chris borrowed money to pay for medicines. He still owes the nursing service more than $30,000.

11Alive worked on Holding the Powerful Accountable; we immediately took up the fight to get the disability benefits. In just two weeks, it finally paid off -- but tragically, too late.

"It was a big whirlwind because it all happened in one day," Chris explained to Liss. " All of a sudden I got frantic voice mails from you, and I came home from lunch and they say call Bill Liss, he needs to talk to you. And even before you arrive we get a call from Social Security. It was something we'd been waiting for for seven years and it just happened within the course of a few hours."

The Kern family will now get more than $71,000 in Social Security benefits going back nine years. Their 13 year son will get monthly benefits until he is 18. Those benefits they will now help the family pay all the bills.

Chris Kern insists that if medical records had been the focus of the Social Security investigation years ago, hardship, near bankruptcy, and scambling to pay for nursing care could have been totally avoided.

Citing privacy rules, Social Security would not go on camera to discuss the case.

Dealing with ALS and understanding it are so important for families and patients dealing with it. We have created a special resource page at 11Alive.comso you can learn far more about the disease and how to deal with it.


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