Cameron R. | Infantile Idiopathic Scoliosis Patient
Parents of Severe Deformity Patient:
In Their Own Words
We discovered Cam had infantile idiopathic scoliosis at 18 months of age. His Nana works at Shriners Hospital in Lexington so we knew about Shriners but didn’t know if we could see a spine specialist. We went that very day and discovered that he had a curve of 54 degrees. Dr. Iwinsky chose to brace him to try to stabilize the curve. Three braces later and 5 years old, surgery was our only choice. He had an anterior and posterior spinal fusion within a week apart. We have been so blessed with the knowledge of the doctors we have encountered, the courage of our big-hearted 5-year-old and the prayers from everyone we knew and didn’t know. Two years later Cameron developed a staph infection and was in the hospital for two weeks after having all the instrumentation removed from his surgeries. When the infection cleared he got a new brace and wore it for several more years.
He was diagnosed with Neurofibromatosis known as NF1, a genetic disorder that causes tumors to grow along nerve endings. That is why his curve went from 54 degrees to 130 degrees. Dr. Iwinsky referred us to Dr. Lenke in St. Louis at Shriners Hospital. He said they have the most high tech facility and knowledge for halo traction and spinal fusion and the ONLY doctor that could help Cameron would be Dr. Lawrence Lenke. He knows Cameron is a sportsman and said Dr. Lenke has a special club in his golf bag he just didn’t have. Cam said, like Tiger Woods? Dr. Iwinsky said,??? the most special club that no one else in the whole world has.???
We didn’t question the doctor we had trusted so much and headed for St. Louis. Cam was in halo traction for about two months and he loved it. He said it made him feel so much better. Dr. Lenke performed Cameron’s 14 hour spinal fusion!! How amazing, by the grace of God and everyone in Cameron’s path, his lung capacity is much improved and he grew 4 inches taller. Shriners Hospital taught us so much about health and happiness and we will be forever grateful.
I wanted to include a letter that some friends of ours distributed when Cameron was having his first surgery and it is the most heart-warming response we could have expected:
DO YOU HAVE A MOMENT TO SPARE?
Five-year-old Cameron will be admitted to Shriners Hospital for Children today. On Wednesday, he will be transported to the University of Kentucky Chandler Medical Center to have the first of two major surgeries within seven days to help correct a very rare and life threatening form of scoliosis. He’s ready. He has his new pajamas, favorite teddy bear, and his life long blanket. Cameron is yet too young to know how serious his condition really is. He only hopes that he can play baseball, basketball and football with his friends. When his mom Michelle was asked what kind of get well gifts he would like, she replied in a squeaky voice. “He wants fan mail.??? No presents, just notes and cards. He even has in his mind that all his mail will come with a handprint on it. That’s all he talks about,??? fan mail.??? At first, we thought this request odd. All through the day, Cameron’s wishes kept coming back… a handprint. The universal symbol for the healing touch. We couldn’t help but to think how excited a very sick little boy would be to receive tons of “fan mail??? from the mail cart each day. Therefore, we are asking you for your help. Do you have a moment to write Cameron a note? A simple hello or get well wish? To help complete his request, we have printed a handprint on paper for you. Your note can simply be written on this paper and then mailed to him. If you will only take a moment to help bring true a wish.
Cameron received over 600 letters and it made him feel like a super star.
Thank you Dr. Lawrence Lenke for taking a MOMENT to SPARE the LIFE of OUR child.