“She is sad not to be able to call the sun her friend”
If two-year-old Dalaynee was in the sun for even 10 minutes, she would break out in a severe, welting rash on her face and hands. Her mother thought it was a reaction to the sun and would cover Dalaynee whenever she went outside. Over the next year, it would only take a few short minutes of exposure for the rash to appear. The rash was becoming more severe, and Dalaynee also started to experience muscle weakness. A dermatologist recommended a biopsy of the rash which confirmed a diagnosis of Juvenile Dermatomyositis or JDM.
JDM is a type of autoimmune disease in children wherein the body’s cells fights its own tissues and other cells, causing inflammation and sometimes tissue damage. It displays as a skin rash and causes inflammation of the muscles, resulting in weakness. It has no known cause.
Dalaynee was referred to a rheumatologist who had her admitted to the hospital for several days and prescribed three different medications, including a steroid, for her. She was eventually weaned off the steroid medication, but now must have a once a week injection of the two other medications. The injections often cause miserable side effects including nausea, lethargy, and anxiety for the sweet little girl. Her weakened immune system and reaction to the sun leaves her spending most of her time indoors. She is sad that the sun isn’t her “friend”.
This daddy’s girl is the youngest of the family and is treated like a princess by the rest of her family. It’s not always the easiest to find indoor activities to keep Dalaynee busy, but she enjoys listening to music, coloring, and making crafts.
Kids Wish Network is hard at work planning a once-in-a-lifetime experience for Dalaynee; check back for all of the enchanting details of her magical wish!