“A friend is someone who knows the song in your heart and can sing it back to you when you have forgotten the words.”
Just beyond the palm-lined entrance to a well manicured neighborhood right here in Newport Beach lives a 12-year-old girl.
Like most girls in the area, she has had a multitude of experiences and opportunities: dance classes, signing lessons, family vacations. In her closet hang beautiful clothes, on her shelf are numerous books, and in the garage is a high-end bike.
But unlike a typical girl, Shira was diagnosed a year ago with Reflex Sympathetic Dystrophy (RSD), also called Complex Regional Pain Syndrome (CRPS). It is a chronic, painful, and progressive neurological condition that affects the skin, muscles, joints, and bones.
She spent her 11th birthday in a wheelchair after losing function in her left leg due to great pain. The pain was so severe, she was forced to give up her spot on a competitive dance team and gracefully bow out of the cast rehearsing for a musical.
Shira in Hebrew means song. And although I have known Shira since she was a toddler, I have really learned the song in her heart this past year. It is a melody of optimism and determination, with harmonies of grace and empathy woven throughout. She sings the song every day. Like a conductor leading an orchestra, it is Shira we have looked to for meaning and inspiration. She keeps everyone in tune even though I know it should be the other way around.
It is enough to be a 12-year-old girl finding her way through the world of middle school, without having to endure physical pain daily. Shira spent three weeks at an in-patient program at the Cleveland Pain Clinic. Several months later, with the horrifying realization that her symptoms had spread to her right side, she and her mother, Barbara, went to Pittsburg for another three-week program.
Home again, Shira must adhere to a rigorous schedule of therapies and doctor appointments.
Yes, it would be enough for anyone to endure the physical pain and the emotional pain of being different. But Shira’s heart truly knows no bounds. She is worried about other children with RSD and is determined to help them.
Last weekend, with the help of her mom and close family friends, Shira was able to organize a fundraiser fashion show she called, “Stomp it Out.” After letting go of dance and theater, Shira began modeling classes, which has been her motivation to push through the pain. On the evening of the fundraiser, she stood with a poise an adult would envy, and gave a speech. In it Shira explained, “All the proceeds will go to start a pilot peer-to-peer program for kids with newly diagnosed RSD, so that they can have someone to talk to, someone who knows what they are feeling and can let them know they are not alone.”
Shira ended her speech with, “This means so much to me and to other children who have RSD.”
What a lovely lesson from a courageous 12-year-old –whatever challenges we face, there are others who also could use a helping hand, or a song in their heart to make it through another day.
If you would like to help or find out more about RSD, visit www.stompitout.info.