Tell us your 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.
What does Children's mean to you, your child and your family?
Dani's diagnosis was very difficult because RND
is rare. Two other hospitals couldn't find out the
source of her pain. Children's gave us answers, and
hope, and finally helped her to recover. It was during her
intensive treatment that I found out there are just two
places that successfully treat childhood RND-
Children's in Seattle and Children's in
Philadelphia. We are so incredibly blessed to have
Children's! I thank God every day for what they have
done (and are doing) for my daughter. Dani dreams of finding
a way to help other RND patients like herself... and
Children's made it all possible.