Giving help and hope to children and families with scoliosis. That’s the mission of Sound for Scoliosis, a nonprofit organization that uses the power and allure of music to raise awareness and funds for the National Scoliosis Foundation.
Sound for Scoliosis’s second annual concert event will take place Fri., Nov. 5, through Sun., Nov. 7, at various venues located primarily in the downtown Scranton, PA area.
During The Grand Finale on Sun., Nov. 7, NSF President Joe O’Brien will read Emily’s story. If you're a regular Maria Talks Back reader, you know all about Emily and her scoliosis saga. Her mom, Suzette, has given me permission to reprint her remarks here as an update -- in case you can’t make it to Scranton next month:
“My name is Suzette Robinson Schrump. I am 46 years young. I am mother, advocate and staunch supporter of my beautiful little girl named Emily, now age 11. In 2005 at age 5, Emily was diagnosed with scoliosis by her pediatrician. In fact, the curve 'appeared' so bad we (Emily's daddy and myself) were given no medical options. UNC Chapel Hill was THE place chosen for our daughter's care.
"For the next 4 years we drove back and forth to the hospital every four months in hopes that we would never hear the words we came to fear the most. 'It's time to start bracing.' In fact, when her 'S' curve was actually MRI'ed (under anesthesia) Emily was also diagnosed with a spinal syrinx. So between orthopedics, neurosurgery and urology, we remained on edge. We determined that four years began to feel like a lifetime.
"June 5th, 2009, our hearts sank, nausea overcame us, as the surgeon gave us the 'news.' Before the brace, it had become commonplace to just wait and worry; now it was here. The brace was coming whether we liked it or not. Our lives had changed forever. Adding insult to injury, our insurance company, United Healthcare, claimed we had went to an out-of-network brace provider (even though we had a written prescription to go to a specific orthotist) and decided to deny all of the claims. Appeals came and went, and denials were the outcome. UHC sent us to a 'provider' of their choice, and the provider simply told me (in writing) that he could not make the brace Emily needed, and that he didn't know why we were given his name in the first place.
"Long story short, we met and befriended Katherine Southard aka Miss North Carolina 2009 at the 4th of July event in 2009 (divine intervention). She put us in contact with a freelance writer, Maria, who is also a scoliosis patient, and had awesome contacts in Raleigh, NC. Maria hooked us up with a radio broadcast station, which we spoke on about our insurance debacle, and BAM! the claim was paid.
"Maria then landed two separate newspaper features about Emily and Miss North Carolina, all in hopes of raising awareness for scoliosis. Katherine came to Emily's school and spoke to the entire student body about scoliosis and her spinal fusion. Emily interacted with Katherine by actually showing the kids how she puts her brace on. The kids were amazed. Emily became a Rock Star.
"Between the three of us adults, we have come together to do everything possible to help people understand scoliosis, and to get the public school system to restart school screenings at a young age. If we can help one child, just one, then it is worth it.
"Emily is on her third brace. She is holding her own. Her curves have not progressed. We are homeschooling her this year because the middle school transition was a task Emily was not willing to take on. We allowed her to make the choice. We are not giving up. We are going to continue to battle the 'system.'
"The Governor of North Carolina recently rejected a proposal put before her as the month of June becoming Scoliosis Awareness month for our state. A shame given the fact that so many other states actually have a month chosen for scoliosis. So the battle continues.....”
You can follow Sound for Scoliosis on Facebook to learn more about the work it is doing on behalf of scoliosis patients.
4 years ago
