UPDATE: Storm Lake family fights for Alex's law - KTIV News 4 Sioux City IA: News, Weather and Sports

UPDATE: Storm Lake, IA family headed to Washington to finish daughter's fight

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STORM LAKE, Iowa (KTIV) -

A mysterious illness took their little girl's life.  Now, Alex Hermstad's family is making sure her legacy lives on.

As identical twins go, Jaci and Alex Hermstad were inseparable, riding horses, playing sports, and at the park. 

"Alex was the pitcher for softball and I would always catch for her," Jaci remembered. 

As the twins turned 11, something changed.  Alex could no longer do the same things as her sister.

"She was a little girl, healthy little girl one day, and the next, literally, everything was taken from her," said mom Lori. 

It started with the loss of feeling in her arm.

"Within 11 months she was completely paralyzed," Lori added. 

For five years doctors were baffled by Alex's illness.  Then, a Boston neurologist diagnosed her with ALS or Lou Gehrig's disease. 

"Even though we knew at that point that for sure we couldn't save Alex, at least we knew what we were dealing with," said Lori. 

"I don't know if I ever met a more courageous person than Alex.  Seeing her fight as much as she did was unbelievable," recalled Mike Hadden, Alex's uncle.

Now, the family is finding ways to continue that fight.  Hadden is leading the charge to crafting new legislation called "Alex's Law." 

"There's nothing more helpless. To watch your child be sick, and there's nothing you can do," explained Lori.

The first part is a state-funded advocate to help families navigate through catastrophic illness.

"This journey was a very very very lonely, hard journey.  To have somebody to say, hey you're doing great, or hey we need to look at this again, or hey there's a resource here," Lori explained.

They also want changes to the Family Medical Leave Act, to extend the time parents can take off of work without losing their job.

"A child doesn't stop being sick after 12 weeks.  To me, that's a huge thing that needs to be revisited," she added. 

The third goal is to create an accreditation system for in-home nursing care agencies in Iowa, something the state is currently lacking.

One of the agencies basically told us when we weren't happy with a nurse, that we weren't happy with a policy, they said, 'Well that's just tough,'" Hadden recalled.

The family has run into roadblocks.  Like everything else the main hang-up is money.

"Alex's Law would necessitate additional hirings to the state government.  So, that's been the biggest hurdle," admitted Hadden.

However, they are undeterred.  In May, they'll go to Washington for ALS Advocacy Days.  Jaci will share her sister's story with Iowa's Congressional delegation.

"She could have given up, right away, but she chose to live and she chose to fight. This is my way of showing that I'm going to continue to fight for her," said Jaci.

Behind every move they make, is Alex's fighting spirit.

"It's in our hands now to make the difference, and make her legacy come alive," added Lori. 

The Hermstads also donated Alex's tissue to researchers and say it's already helping doctors studying ALS.

 

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