Grandparents ride on horseback for Batten Disease awareness - KWWL - Eastern Iowa Breaking News, Weather, Closings

Grandparents ride on horseback for Batten Disease awareness

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WASHINGTON COUNTY (KWWL) -

This isn't a journey the Mohr family of Ute, Iowa asked for, but with every step, Randy and Tammy are determined to get closer to finding answers.

"Are you ever really over the pain of your first grandchild?" Tammy Mohr asked.

Their grandchild, Taylor, was diagnosed with Batten Disease at four years-old.

"We had never heard of it but found out how devastating it was," Tammy said.

The rare neuro-degenerative disease is uniformly fatal.

Now at  the age of eight, Taylor has lost his vision, is bed-ridden, and dependent on feeding tubes.

But his spirit remains strong.

"He loves to be talked to, he loves to be sung to," Tammy said.

While Taylor's health worsens, the family refuses to sit idly by.

Tammy and Randy are riding the length of the state on horseback, river to river,  for the second straight year to help raise awareness and funds for research.

All money raised from their ride across the state is being donated to the University of Iowa College of Medicine, a world leader in researching Batten disease.

"What's happening in the brain is it's missing an enzyme that is responsible for degrading used up materials," said Beverly Davidson, a professor in neurology with the University of Iowa College of Medicine.

Researchers in Iowa City have made significant recent progress in treatment -successfully curing mice with the same genetic defects as in children suffering from Batten disease. 

"We're able to put the gene back into the brain," Davidson said.  "The gene will then express this missing enzyme and will then correct the ensuing disease."

Researchers expect the next five years to be key in getting closer to preventing and treating the disease.

It's the reason Tammy and Randy ride some 300 miles in more than two weeks, in hopes of using Taylor's story to help others.

"A thousand other families are out there that have the same trials and tribulations that they go through every day, and so hopefully it will help one of those kids someday," Tammy said.

The Mohr's raised more than $13,000 in their ride last year. 

To learn more about donating to their cause, log on to their facebook page here or contact the University of Iowa College of Medicine.

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