A metro man we introduced to you two years ago isn’t giving up in his fight against an incurable disease.
Keith Miner suffers from ALS or Lou Gehrig’s disease.
For years Miner helped raise money for others fighting the disease through his foundation, “Racers Against ALS.”
However, this past March he asked for help of his own to get a treatment an ocean away.
Keith Miner is running out of time.
“I`m getting worse every day for the first year and a half it was moving really, really slow up until the last six months to a year it`s speeding up,” the 31-year-old said.
Keith was diagnosed with ALS when he was 28-years-old.
“The average life expectancy is two to five years, I’m in year three and doing fairly good compared to most people three years in,” Miner said.
But the reality is ALS has no cure.
“When you`re diagnosed with ALS it`s a death sentence, that`s devastating for people and devastating for their families,” Executive Director of the ALS Association Iowa Chapter Tanner Hockensmith explaind.
Hockensmith says research is behind because so few people are diagnosed with ALS, in Iowa around 250 people are affected.
“Within the past two decades we’ve seen a massive progression in identifying causes, triggers and slowly being able to find things for treatments as well,” Hockensmith added.
But Keith doesn’t have time to wait so he started looking at alternatives.
“China has had the most experience and the most success,” Miner said.
With help from friends, family and strangers Keith raised more than $35,000 to fund his trip.
“I`m just looking forward to getting there and seeing what happens, just praying and hoping that I can gain some strength back and stop the disease for at least a little while,” Miner said.
His wife Lindsay is looking forward to her husband’s trip, ““I think it`s great that Keith has been so proactive and he`s not scared to try things and that`s just him go big or go home.”
And Keith has a lot to live for, his two sons four-year old Cole and one-year old Lake.
Baby number three is due in November.
“Everything our family, our life, our future all rides on this,” Lindsay Miner said.
“I`ve said from day one I’m going to do whatever I can within our means to try and save or prolong my life,” Miner said.
“I’m hoping while the U.S. is trying to get this trial done that I won`t be in horrible condition or dead by the time that drug trial is done. If I can hold where I’m at now than when this trial comes out I might be able to save my life,” Miner said.
But Hockensmith says trials and research in the U.S. take time because FDA standards make certain when a treatment does come out it’s safe and effective for almost everyone.
“We are progressing here in the United States, but we have those standards for a reason and we take that process for a reason so that way people will find a cure and find a treatment and it can be put out to a broader audience,” Hockensmith said.
It’s a risk Keith is willing to take, a risk that might just give him more time with the people who matter most.
“I got a lot to live for and my boys are the best. I just hope when I come back I can throw the ball to him and pitch to him and move around better, and my littlest boy Lake I`m just hoping I can come back and pick him up and play with him,” Miner said.
His wife agreed, “I`m very hopeful and I’m hopeful for him more than anyone else that it works. A lot is riding on it”
Miner arrived in China late last week and will receive treatment for two weeks before returning home.
His doctors said it could be three to six months for him to know if the treatment will benefit him.
If Miner see’s improvement he hopes to raise money for other ALS patients to go to China and get similar treatment.
For more on Keith’s charity “Racers Against ALS” click here.
To help donate to his organization, click here.