Dani's story

In 2002, my then 8-year-old daughter Dani was taken to the emergency room near our home in tremendous back pain. Once we got her to the hospital, we had great difficulty getting her out of the car. The emergency room didn't know the cause of the debilitating pain. She was sent for more tests, but there was no answer as to what was causing the pain and mobility problems. After three trips to ER, our pediatrician referred us to Children's rheumatology to "get to the bottom of the pain."

At the conclusion of our initial appointment, the doctor told us she knew what Dani had. She said that in R.N.D. one of the three types of nerves (associated with the vascular system) malfunctions and floods the brain with pain signals. The patient feels an incredible amount of pain, followed by increasing inflammation. The affected area(s) may feel hot or cold to the touch. If not treated, it can even result in paralysis. That was why it was so hard for her to move the 3 times we had to get her to the hospital.

I'm sure parents have a mixture of reactions to finding out about an RND diagnosis. I cried in relief. Dani was sent to the Occupational-physical therapy department to begin treatment. Eventually, she was sent into the intensive inpatient program, and in November of 2005, right before Thanksgiving, was admitted. I stayed at the Ronald McDonald house so I could be nearby while she progressed. Doctors told us the program is "like training for a marathon, only even more intense." Her days were filled with 8 hours of physical, and occupational therapy, pool therapy, and more. She "graduated" from the program, and today is doing very well.