Moms run New York City Half-Marathon for a special cause

NEW YORK (WABC) -- Two Staten Island mothers will be running the New York City Half-Marathon with a goal all their own: raising money to help their sons fight a rare genetic condition.

Their sons, John and Robert, are friends who've bonded because they were born with the very same genetic condition.

The 9-year olds are missing fingernails or entire fingers, and were born without skin on entire areas of their bodies. The condition is called epidermolysis bullosa, or EB for short.

"The easiest way to describe it is they are missing the glue that holds the layers of their skin together," said Kathy Twible, the mother of an EB patient.

The kids seem as though nothing is the matter, but they must go through a daily two-hour ordeal of cleaning their skin and dressing it.The most severe areas are on their stomachs, backs, legs, feet and arms.

They use giant medicated bandages as dressings to protect their skin. There are feeding tubes to feed them overnight, because all of the abrasions visible on the surface are inside their bodies, too.

The pain is chronic, but gets even worse when they have to take baths in vinegar and bleach.

Their moms felt they had to do something, so they are raising research money to fight and one day cure EB by running the New York City Half-Marathon. So far, they have raised $25,000 for research.

Robert and John Hudson say they feel their moms' support every day, and promise to be at the finish line waiting for them to complete 13.1 miles on race day. The New York City Half-Marathon goes 13.1 miles, and this year a record number of more than 15,000 runners will participate. The NYC Half will begin at 7:00 a.m. March 18, and will be broadcast live on WABC-TV, 7online and the New York Road Runners website.

For more information please visit: http://www.nyrr.org/get-training

MORE ONLINE:

http://jgsf.org/

http://www.crowdrise.com/teamjgsfhalf/fundraiser/KathleenTwible

http://www.crowdrise.com/teamjgsfhalf/fundraiser/FayeDilgen

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new york city, children health, staten island, new york city half marathon, new york city marathon, new york news, michelle charlesworth

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