Sonny boy is 3 years old. He is the sweetest, most charming little boy. He doesnt let anything discourage him, even if he cant walk... Sonny was born prematurely at 32 weeks, and has been a fighter ever since his first breath... After spending a total of 4 months in 2 different Neonatal Intensive Care Units, he finally came home to us! Slowly we started seeing that Sonny wasnt hitting his developmental milestones as expected, so we spoke to his pediatrician... She had suggested looking into seeing if sonny had a "traumatic birth injury". So we scheduled an MRI brain scan, and got the results on Sonnys second birthday... He has Spastic Diplegic Cerebral Palsy. Cerebral palsy occurs when the brain is deprived from oxegyn, therefore causing brain damage which affects the persons motor skills, as well as mental function in some cases. There are many different forms of cerebral palsy, in Sonnys case it effects his legs (Diplegic). Sonny muscles are extremely tight (spactic) which makes it so he can't use his legs properly to walk.... We have been doing intensive physical, speech and occupational therapy 2 times a week for 1.5 years now to try and help improve sonnys overall function... Luckily, we heard about this amazing surgery for kids/adults with Spastic Diplegic Cerebral Palsy! It is called a selective dorsal rhizotomy (SDR for short). SDR involves sectioning (cutting) of some of the sensory nerve fibers that come from the muscles and enter the spinal cord. Two groups of nerve roots leave the spinal cord and lie in the spinal canal. The ventral spinal roots send information to the muscle; the dorsal spinal roots transmit sensation from the muscle to the spinal cord. At the time of the operation, the neurosurgeon divides each of the dorsal roots into 3-5 rootlets and stimulates each rootlet electrically. By examining electromyographic (EMG) responses from muscles in the lower extremities, the surgical team identifies the rootlets that cause spasticity. The abnormal rootlets are selectively cut, leaving the normal rootlets intact. This reduces messages from the muscle, resulting in a better balance of activities of nerve cells in the spinal cord, and thus reduces spasticity, therefore allowing sonny to use his legs normally! After comoleting our research we were convinced sonny would make an excellent candidate. We applied 1 month after getting Sonnys diagnoses in July 2016. He was accepted for the surgery in Saint Louis by the wonderful surgeon Dr. Park! We Then submitted a request to our insurance company, which got denied because they felt it is an "elective procedure" and not a "medically necessary procedure"... We resubmitted to the insurance with a letter from Dr. Park explaining how this will change sonny's life and allow him to walk, but again just got our denial on 8/31/17...
For us, as sonny's parents, this surgery is more necessary than we can even explain... To know that there is something we can do for sonny, to help allow him to walk is a no brainer for us... How the insurance companies don't see this is beyond me... To see our son run, and play with his siblings would be the greatest girft we could ever ask for. To not have to use a wheelchair at school, or park in the handicap spaces so that its not so far for sonny to wheel himself, or have to carry our 3 year old and help him play on the playground... It seems like a fairy tale... But this surgery can make this story come true! We are faced with paying for his surgery out of pocket now...The surgery on total costs $35,045.00. We will cover the cost of lodging and travel to get him out there, we are simply trying to raise money for the surgery itself. We cannot schedule surgery until we have the funds, and the funds need to be paid in full 30 days before surgery or the surgery will be cancelled/rescheduled. The cost of the surgery will also be rising at the begining of 2018 so we are trying to have the funds raised by november 5th 2017 at the latest so we can go out to Saint Louis by christmas time and have the surgery performed. It will be Christmas, and we cant think of a better gift to give sonny!!
Thank you for reading and donating if possible... You are taking part in changing our little boys life forever. Please share his story with everyone you can.
- Brad Foster
- Susan Paul
- Maura Schroeder
- Angela Potupchik
Joey Shannon Burgos
Colorado Springs, CO