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Education/Schools

July 1, 2011

Blessings for Brody: Yard sale will be Saturday to help infant born with rare skin disease

CHARLESTOWN — Though he’s little more than a month old, Brody Curtis has drawn a lot of attention both locally and nationally.

He was born May 24 with a disease called epidermolysis bullosa, which is also known as EB or Bart Syndrome. Babies with the condition are born with widespread blistering and areas of missing skin that make them susceptible to infection. Doctors said that his skin looked like it had suffered third-degree burns.

While his story has been picked up by local and national news media, Brody’s mother, Heather Curtis, said the Charlestown community has been there from the start.  

“We’ve had a lot of support, even before the stories aired on the news and in the papers,” she said.

Curtis said other parents who have children with EB have contacted her via Facebook to tell her about treatments, groups and resources. Friends and family have provided meals and she said both acquaintances and strangers have sent gift cards and money.

“It’s really great that people come together and show their support in that way,” she said.

Curtis, who is a math teacher at Charlestown High School, said she didn’t expect all the attention and simply wanted to get publicity for Saturday’s yard sale. She said she also hoped to raise awareness about the rare disease.

“I don’t want people to think that I want this to be in the paper or that I want pity from other people,” she said. “I just really want to get the word out that there is this disease, and there is no cure, and that it’s something most people have never heard of.”

Her pregnancy and delivery were normal. Curtis said she and her husband Chuck only knew something was wrong when doctors noticed discoloration on Brody’s extremities.

Brody was transported to Kosair Children’s Hospital in Louisville where he was in the neonatal intensive care unit for 27 days. He battled infections and bleeding from his wounds while doctors tried to determine what was causing his symptoms. There are two types of recessive dystrophic EB, and he was eventually diagnosed with the most severe. The condition affects about one in a million children, Curtis said.  

Now that Brody is home, she said their challenge is attending to and changing bandages on his arms and legs daily while caring for their 5-year-old daughter Mckenna. She said that while her son can be held like a normal baby and is healthy otherwise, he must be handled carefully.

“It just takes a very little amount of friction for his skin to separate or blisters to pop up,” she said.

The family will possibly know more about his condition after visiting a specialist in Cincinnati. Curtis said even then, his future is uncertain.  

“We don’t know where this is going to go or what’s going to happen,” she said.

As of Wednesday, volunteers had already filled two rooms with everything from baby clothes and toys to furniture for a benefit yard sale Saturday, even though formal drop-off times weren’t scheduled to begin until Thursday.

Nicole Morrison, a teacher at Charlestown High School who is helping to organize the sale, said that along with donating items, community members have turned out to plan different events to help cover the Curtis’ travel and medical costs. She said contributions have come in from around the country, but the outpouring in the local community has been astounding.

“Heather [Curtis] has been a lifelong resident of Charlestown, and so many kids here have had her as a teacher,” Morrison said. “Anything where a local family, especially a baby, needs help, people are very willing to respond.”

The yard sale will be  from 7 a.m. to noon Saturday in the Charlestown High School parking lot. Donated items can be dropped off  from 10 a.m. to 2 p.m. and from 6 p.m. to 8 p.m. today at the high school. Proceeds will go toward paying medical costs.

For more information or to donate items, contact Angela Coleman at 812-989-0652.

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