- Associated Press - Saturday, December 12, 2015

HAVERHILL, Mass. (AP) - What started with a letter from a 7-year-old girl ended with a proclamation from the mayor.

Eleonora Connolly, 7, a second-grader at Golden Hill Elementary School, wrote to Mayor James Fiorentini, asking the city’s support to help a cause close to her heart- a rare disease known as Epidermolysis bullosa.

Her brother Jonathon suffers from the disease, which causes painful blisters on the skin. Eleonora wanted to see if the mayor could help organize a community bake sale to raise money to fight the disease, which has changed her family’s life.

Instead, the mayor did one better. With the stroke of a pen, he proclaimed the week of Dec. 7 as Epidermolysis Bullosa Week in Haverhill.

“A week ago, a Girl Scout troop visited me and sent me letters about how we can improve the city,” Fiorentini said. “But this letter really touched my heart.”



City Councilor Mary Ellen Daly O’Brien, a registered nurse, helped Fiorentini issue the proclamation at his week’s council meeting.

From her years as an emergency room nurse, Daly O’Brien said she is familiar with the disease. According to medical experts, it affects 20 newborns per 1 million in the U.S. and there are an estimated 25,000 to 50,000 victims of the disease nationwide.

The severity of the disease can range from mild to lethal.

“I understand what this can do and how it affects your family and the plans you make,” said Daly O’Brien, explaining the disease is the result of a defect between the dermis and epidermis layers of the skin.

“In the medical world, we call children with this disease ‘butterfly children’ because their skin flakes off as thin as butterfly’s wings,” said Daly O’Brien. “It’s been around for 40 years.”

Fiorentini handed Eleonora a copy of the proclamation, drawing applause from those at the City Hall meeting and moving her mother, Whitney Connolly, to tears. She thanked the council for supporting the proclamation.

“Without people like you, it can’t be done,” she said to Daly O’Brien of the care nurses give to victims of the disease. “The care that goes into it, the appointments … He’s been hospitalized many times with infections.

“Without the nurses and care, we couldn’t get things done,” she said.

Fiorentini called the designation of Epidermolysis Bullosa Week an “early Christmas present.”

“I can’t make every wish and letter that we get come true, but we were happy to make this one come true,” he said.

After the proclamation, the Connollys reflected on life with the disease.

“It’s painful, mostly,” said Jonathon, 16, who attends Whittier Regional High School.

“He can’t do contact sports and even something as simple as wrestling with his sister can hurt him,” his mother said. “Sometimes the beach isn’t good for him, so we try to do activities that include everyone.”

Whitney Connolly said it’s hard on Eleonora and her older sister Ariana when Jonathon is hospitalized.

“It’s hard for them when they have to be away from him,” she said, adding that he has to travel to Worcester to see a specialist.

“I have a binder with me with his information in case we have to go to a hospital that isn’t familiar with him or the condition,” she said.

Eleonora said she dreams of being a firefighter and summed up her reason for writing to the mayor.

“My brother is special and means a lot to me,” she said with a smile.

___

Information from: The Eagle-Tribune, https://www.eagletribune.com

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