Get ready to walk and roll to help Hoosier kids with disease similar to ALS

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By Tanae Howard

For the Bertsch family, dumping a bucket of ice on them has a special meaning. Their son suffers from a disease similar to ALS called Spinal Muscular Atrophy or SMA.

Four-year-old Luke Bertsch was diagnosed with SMA at the age of two. It's a fatal neuromuscular disease just like ALS that affects children.

"The disease weakens the muscles. Luke has never been able to stand. He's never been able to walk. When he was young he could get up on his knees and crawl," said mom, Kelly Bertsch.

Luke has type 2 SMA and his life expectancy is unknown.

"We're not sure how long it will be until he starts to go downhill and he will lose a lot of the stuff he has now but it will be a longer progression for him being a type 2," said dad, Jason Bertsch.

The family says the ALS ice bucket challenge helped push the fight back to the forefront of people's minds.

"We were thrilled to see that. ALS does not get enough attention and SMA, if you find a cure for ALS you're probably gonna find a cure for SMA," said Kelly.

August is SMA Awareness Month. Hoosiers will get together for the third annual Walk and Roll this weekend. Bringing families and children together who are in this battle together vowing to never give up.

"We came very quickly to a decision as parents to make sure that life is full for Luke and that he lives every day to the fullest and without limitations," said Kelly.

The Bertsch parents said they had no idea both of them carried the SMA gene that resulted in Luke's condition. They have an older son who does not have the disease. They urge all future parents to consult your doctor about getting tested for the gene before getting pregnant.

For more information on the Walk and Roll this weekend or to donate click here

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