Mary Emerson, RN, 18N-Surgical Progressive Care Unit, has worked at Stony Brook University Hospital for 13 years. She provides homecare for Brian, an 8-year-old boy who was born with Dystrophic Epideromolysis Bullosa, a devastating genetic skin disorder. She founded the Care Cottage, Inc. and is building the Honey House, a tiny house that is like a portable burn unit on an eight- by 20-foot trailer.
“We are building a portable medical treatment unit for Brian – a little house on wheels, with dedicated space for his medical care, separate from his family’s living area, which will reduce the spread of infection,” Mary says. “The house will have a walk-in whirlpool bathtub in which Brian can submerge himself to clean and gently debride his wounds, which will reduce his bath-time pain by 50 percent. There’s no drug we could give him that would provide that much pain relief; it’s a safe, effective, non-narcotic solution to the everyday agony caused by bathing.”
This has all been achieved through fundraising; candy bar sales, an ice-skating party and a grant from one of the largest construction companies on Long Island. “Some of the moms at the PTA did a letter-writing campaign that really worked,” she says. Her husband, a musician, and his band held a fundraiser at Mt. Sinai congregational church.
After researching tiny houses for a long time, Mary says she dragged her good friend to a tiny house workshop a couple of years ago. “He’s been a patient here on and off for a number of years and I gave him my kidney, so he owes me,” she says.
Having a pool of reliable nurses to draw from at Stony Brook has been a gift to this family. “Without the Stony Brook connection they would be so isolated, on their own with nurses who aren’t prepared to deal with this,” Mary says. “I can get burn unit nurses to come in who have seen this stuff before.”
She dismisses any praise for her good works. “I just like to see things get done,” she says. “A lot of nurses have that. I want to help. I don’t want to be shoveling sand against the tide. I want to make a difference.”