Not long after Dancing With Bear Publishing opened its internet doors, the husband of one our authors passed away suddenly, leaving his wife, adult son, and a teenage daughter with no life insurance. DWB decided to help by making one of the author’s books a benefit, and all the royalties earned in 2012 went directly to the family.
This year’s benefit is a little closer to home. Late last year the publisher’s granddaughter, Meagan, who is three, was diagnosed with STILLS disease, a type of juvenile arthritis; however, Meagan has the rarest form that also affects her organs. This was diagnosed after two years of being admitted to hospitals and going to doctors, as well as being tested for every illness known to man. From lupus to various forms of cancer and other scary sounding diseases, Meagan was tested for each one, and finally, when all else failed, a complete genetic test was done which revealed nothing unusual.
For her mother, Lisa, this litany of testing was difficult and with each negative report came another disappointment. Although the diseases sounded horrible, knowing what was wrong would at least mean a course of treatment that would lead Meagan to being healed. Finally, after every negative diagnosis, one single doctor made the connection between the symptoms and STILLS. But the problem is there is no actual cure for this disease, especially the rare type Meagan has. Right now all they can do is treat her symptoms, giving her steroids for the swelling in her joints, keeping her on a diet that doesn’t cause inflammation, and keeping her on a strict play and rest schedule.
On flare-up days, Meagan cannot bear her own weight, she cries, runs fevers of 103 and higher, she vomits and cannot keep any food or liquids down, she has dark circles under her eyes, and she breaks out in a rash. On other days, you would never know she was sick. She loves playing princess and ballerina, riding her bicycle, playing with her cousins, and yelling at her little brother for touching her toys!
Butterflies For Meagan is a story Meagan told her mother about herself. Lisa thought it was so cute and wrote it down as a keepsake she would show Meagan one day when she was older. As her Nana, the publisher thought this would make a cute book to use for a benefit to help Meagan’s parents make ends meet. Trips to the doctor are numerous and costly, as well as hotel costs and food, medicine, and the three days every 90 days that Meagan must be hospitalized to receive IV steroids. So, for 2013, Butterflies For Meagan is DWB’s benefit book, and 100% of all royalties will go to Meagan.
You can order at www.dwbchildrensline.com (click on “Books For Little Paws”).
You can learn more about STILLS disease at http://www.stillsdisease.org/