Spreading warmth, and E.B. awareness

Alison and Emily Carman, sisters at W.T. Clarke Middle School, sold hot chocolate last Saturday in front of their East Meadow home to raise money to find a cure for epidermolysis bullosa. Their friend Robbie Twible, center, an eighth-grader at Clarke, has E.B. Perched atop Emily was Robbie’s 7-year-old sister, Allison.

Courtesy John Carman

Sisters Emily and Alison Carman said they had long noticed Robbie Twible, an eighth-grader at W.T. Clarke Middle School who has a rare, debilitating skin disease, walking through school hallways.

But two years ago, Emily, who’s now 13, and Alison 11, became friends with Robbie, learning about his disease — epidermolysis bullosa — and the challenges he faces every day. The more they discovered about Robbie, E.B. and his indomitable spirit, the more they admired him.

So the girls took the friendship to the next level. Emily devoted a health class project to E.B., spreading awareness among her classmates about the disease. Next, the sisters hosted a hot chocolate fundraiser a year ago in front of their East Meadow home, raising $600 for the Jackson Gabriel Silver Foundation, which aims to find a cure for E.B.

Last Saturday, the girls continued their campaign, once again selling hot chocolate and cookies from a stand in their front yard. They promoted it using techniques new and old — social media and spreading fliers — and more than 50 of their friends and neighbors gathered in their Margaret Drive front yard for several hours, chatting excitedly, shooting hoops and simply enjoying one another’s company on a crisp autumn day. The atmosphere more closely resembled a fall festival than a bake sale.

E.B., which causes severe blistering all over the body, has no known cure. One in every 50,000 children in the U.S. is born with some form of it. According to the JGSF, 50 percent of children with severe E.B. are in constant pain.

Emily and Alison, with the help of their parents, Nancy and John, and friends, sold $845 worth of chocolaty treats throughout the day, which, as usual, they intend to donate to the JGSF.

The sisters used no shortage of complimentary adjectives to describe Robbie, who’s now 12, including “brave” and “inspirational,” but they agreed that what’s most important to them is seeing him smile. “It makes me happy knowing that he’s happy,” said Alison.

Added Emily, “Robbie’s doing amazing. It’s a miracle.”