Virginia Beach, Va. – A man is running from coast to coast to bring awareness to the 30 million Americans battling rare diseases. Soon, Noah Coughlan will make it to Virginia, where he is dedicating his run to two Virginia Beach boys.
“This guy is running for my child, for these children that he`s never seen before,” said Marlo Dean, mother of 12-year-old Dante Herrera. The Virginia Beach middle schooler is battling Batten Disease. There is no cure for the rare and fatal disease, which attacks the nervous system and chips away at the victim’s motor function, hearing, speech, and vision. The family’s insurance company, Optima, repeatedly denies coverage for advanced genetic testing that could help pinpoint the cause.
“I got this sweetheart that gives me so much love,” said Dean. “I just can`t imagine my life without him.”
“It`s just been really rough for us,” said Dean. “But I thank God and I embrace every day. Keep pressing on and try to make him happy!”
Running used to be one of the things that made Dante happy, but the disease has slowly made that just a memory.
“Most of the time he’s in a wheelchair because he fatigues very easily,” Dean said.
Now, Coughlan is taking the steps Dante no longer can. Pushing an empty stroller, and a huge American flag, Coughlan hopes his eye-catching cross country trek will raise awareness for all rare diseases.
“Knowing that it’s putting a smile on the face of many of these families, the least I could do is run,” Coughlan said.
In each state, Coughlan meets with rare disease families and lawmakers, and spreads awareness through social media.
When he crosses the Virginia border later this month, he’ll be running for Dante and Zeq Caalim. NewsChannel 3 first shared Zeq’s journey in 2013. He is battling eosinophilic esophagitis, a rare disease that made Zeq’s body believe food was the enemy.
“We’ve been going to Johns Hopkins almost every month, sometimes twice a month,” said Kristine Caalim, Zeq’s mother.
“The stories about [Dante and Zeq] that’s why I wanted to kind of highlight them when I go through Virginia,” said Coughlan. “Just amazing people.”