Man runs coast to coast to bring awareness to rare diseases

Posted at 12:33 PM, Mar 23, 2015
and last updated 2015-03-23 12:33:24-04

Virginia Beach, Va. - A man is running coast to coast to bring awareness to rare diseases.

Noah Coughlan has dedicated the Virginia portion of his cross country run to Hampton Roads kids in the fight of their lives.

Over the weekend, he made a special stop in Virginia Beach, a few weeks into his cross country run to bring awareness to rare diseases.

Noah Coughlan has crossed into the Commonwealth, and while his route doesn't run through Hampton Roads, he took a special detour to Virginia Beach for some of his biggest fans.

"Well, you're looking at the reasons why I'm running!" Noah says.

Noah is surrounded by Zeq Caalim, Dante Herrera, and little Savannah Geiger.  All of these kids from Hampton Roads are battling rare diseases.

"I will always take a day off or do a special tribute to the children who are fighting a daily fight."

Over the weekend, that fight took a backseat to a big fundraiser for Dante at Smoked from Above BBQ.

You see, the 12-year-old is battling Batten Disease. It's slowly taking away his ability to walk, talk, and see. It's fatal, and insurance companies aren't covering all his needs. That's a common thread among families battling  rare diseases; and one of the reasons that Noah keeps running.

"It's great to know that someone cares so passionately for rare diseases to get out in all kinds of adverse weather and make his way across America for our kids, for adults with rare diseases."

Noah's also dedicating the Virginia leg of his run to little Zeq Caalim. He's battling Eosinophilic Esophagitis, a rare disease that makes his body think food is the enemy.

Through prayers -- and financial assistance from the Hampton Roads community -- Zeq's treatment has helped him get better.

"He's been having fun, especially with the other rare kids that are here today. It's nice to see that there are other people who are going through the same journey we are going through."

It's a journey the Geiger family is beginning to face. Within the last year, 5-year-old Savannah was diagnosed with an extremely rare gene mutation -- referred to as Kat 6A. It's affecting every area of her body. Doctors only know of a dozen kids in the world who have it.

"Our Kat kids specifically do not have a voice, so Noah is our voice and that's awesome. He's an advocate for all of these guys, for everybody who's rare, and it's touching that he can do that."

State and city leaders honored Noah's cross country trek, and promised to help continue the journey here in Hampton Roads.

"Dante and Zeq have some rare diseases that a lot of folks really don't know about, and they need our help from all levels."

"Your heart always opens up for the families who are going through things, and it really magnifies that feeling."

It's a feeling that Noah will carry with him, each step along the way.

"He is an inspiration, he is amazing for doing what he's doing."

This weekend's event was held at Smoked from Above BBQ in Virginia Beach. They donated ten percent of their sales to Dante's medical bills.

If you'd like to learn more about awareness for rare diseases, click here.