They say there is no limit to how far a mother will go for her child, especially to comfort an ailing child. Six years ago, local military spouse Amanda Huston hit the pavement in an effort to live a healthier lifestyle. That decision eventually led to Huston's idea for a unique way to bring awareness to Sturge-Weber Syndrome (SWS), a congenital neurological and skin disorder that affects her son, Jeremy. In 2014, she organized the fundraiser "Jeremy's Pile of Miles." With May being Sturge-Weber Syndrome Awareness Month, Huston and a team of runners will use the month to continue bringing awareness to this rare disorder.   

Jeremy was born in October 2000, and almost immediately Huston and her husband, Master Sgt. Paul Huston, junior commandant of the NCO Academy on Joint Base Lewis-McChord, knew there was something going on with their son. Doctors noticed what at first was thought to be a bruise on Jeremy's face and scalp. But further testing showed that Jeremy had glaucoma in his right eye and the bruise was a Port Wine Stain (PWS). Shortly after, the Huston's learned that Jeremy had a rare disease called Sturge-Weber Syndrome. Very little was known about the disease then and even today, more research is still necessary.

Jeremy takes eight different medications to treat his SWS. He is legally blind in his right eye and suffers from seizures. He has also had over 30 surgeries in his lifetime including laser treatments on the PWS and for the glaucoma in his right eye. While the seizures have been controlled with medication, there is no cure for SWS. But Huston wants people to know that Jeremy is so much more than the PWS birthmark on his face and more than his SWS.

"He is the happiest young man that I know," she said. "We just want people to get to know Jeremy and not just see his differences.

The Sturge-Weber Syndrome Foundation solely relies on funds that are raised and donated for continued research. In her first year, Huston raised $300. Last year she raised $700 and has proudly surpassed her goal of raising $1,000 this year, and is still accepting donations. "When you realize that less than 5,000 people in the United States alone are affected by SWS, you realize that not many people know that Jeremy doesn't just have a birthmark," said Huston. "That is why I help spread the awareness."

In 2014, Huston completed the Portland Rock'N'Roll Half Marathon as her inaugural run for Jeremy's Pile of Miles. Since then, fellow runners and supporters have helped spread SWS awareness by participating in the Capital City 5K, the Minnesota Marathon, and the Capital City Marathon. Many other runners participated in events all over the country to show their support for Jeremy and SWS.

This year, Jeremy's Pile of Miles will kick off their fundraising season with the Eugene Marathon in Eugene, Oregon May 1. Huston and a team of seven devoted runners will participate, all of whom are connected to the military. The team includes Kelly Linman of Puyallup, JoAnne Bernhardt of Yelm, Asuka Christmas of Lacey, Bobbie Sheff of Lacey, Ann Lasola of DuPont, and Laura Gaxiola of Bremerton.

Huston wants everyone to know that anyone can participate in Jeremy's Pile of Miles by joining a local race - running, walking, swimming or even hiking. It is a free event and Huston just asks that you pledge your miles in honor of Jeremy and others who live with SWS. Participants are able to print out their bib to wear while they complete their miles, and the goal is to inspire conversation about SWS.

For more information and to donate, please visit: www.facebook.com/JeremysJourney.