Mary Emerson's Honey House
I am infatuated with Mary Emerson's "Honey House Project". She attended one of my workshops about a year ago and has, subsequent ally, been changing the world for the better and sending me emails about it. Mary is related to the guy who I named my son, Emerson, and one of my early house designs after. It seems that good work for the greater good may run in the family.
Mary Emerson and 4 other nurses are working on building the Honey House, a portable medical treatment unit for young Brian Ilg, an 8 year-old boy from Patchogue, NY who was born with Dystrophic Epidermolysis Bullosa, a painful, disfiguring skin disorder. You can like the project on their Facebook page here, watch a short interview with one of these dedicated nurses here, or help fund the project here.
Read on for an excerpt from Mary's email…
I'm sending you a few paragraphs from what I'm calling my "pitch letter"—a quick way to let people know what we're doing. I don't have a request of you except permission to carry around a laminated copy of your remark, "I love you and the work you do, Mary Emerson."—and if I put that on a website and attribute the quote to you, I think it would help the cause!
We're nurses from Stony Brook University Hospital who need your help
We're working on a project to benefit eight year old Brian Ilg, a young Patchogue resident (a third-grade student at River Elementary, in the Patchogue-Medford School District ) born with Dystrophic Epidermolysis Bullosa, a debilitating and painful skin disorder. Described as "the worst disease you've NEVER heard of," the continuous blistering caused by this condition disfigures a person's arms, fingers, legs and toes; any kind of friction causes wounds to develop—sleeping on his own pillow at night blisters his ears. The blisters form inside the esophagus, intestines, stomach, mouth and respiratory tract as well. Brian's ability to eat is impaired by microstomia; the oral cavity shrinks because of scarring and adhesions. His tongue is adhered to the bottom of his mouth, and his esophagus is narrowed to the point where he'd choke on a well-chewed french fry. Brian's care entails a daily, three hour-long dressing change of the bandages he requires in order to protect his skin from injury and treat the wounds that affect 60% of his body.
We are building a portable medical treatment unit for Brian—a little house on wheels, with dedicated space for his medical care, which will reduce the spread of infection. The house will have loft space for storage of medical supplies. The house will have climate control. When his dressings are in place, it's like wearing a winter coat and Brian is most comfortable at about 62 degrees; with his dressings removed, however, he's at risk for hypothermia and needs to be in a much warmer environment. Most importantly, the house will have a walk-in whirlpool bathtub in which Brian can submerge himself to clean and gently debride his wounds, which we estimate will reduce his bath-time pain by 50%— there's no drug we could give him would provide that much pain relief; it's a safe, effective, non-narcotic solution to the every day agony caused by bathing. Finally, as an alternative to Extreme Home Makeover-style renovations, another advantage to this little house is the fact that it's on wheels—it can go wherever Brian goes! The house is being built on a 20' long, 8' wide double axle trailer.
This project is entirely nurse-driven; I work with Rosemarie Parisi, another of Brian's nurses, and Lauren Marie Gonzalez, RN, a colleague from Stony Brook University Hospital. We've had a lot of time to assess this patient and his particular needs. You can follow our progress on the Facebook page entitled, Help Build the Honey House. We're applying for 501(3)c status as a registered non-profit; we've incorporated as Care Cottage, Inc. We plan to apply for grants and donations from the for-profit businesses that serve the Epidermolysis Bullosa community, but need to have non-profit status before that's an option. So it's bake sales and car washes until then!
I began working with Brian when he was two; his hands had never been completely unwrapped and he didn't know how to use them; he wasn't walking or talking and was barely eating. We put together a good team of nurses and he had gifted therapists to help him; he made great strides over the next two years and I've never had a more satisfying work experience—no, beyond satisfying, it was thrilling. I felt like Anne Sullivan working with Helen Keller—every day, I used every creative idea I could think of to help this child, and he responded. You don't get chances like that very often; the Honey House is a similar opportunity, and we can all be a part of it!