Cameron's Johns Hopkins letter

Dr. Vining,
I emailed you earlier about my daughter Cameron who was recently diagnosed with Rasmussen's Syndrome in July. She started having seizures when she was 3 and was initially diagnosed with Cortical Dysplasia. She is 5 years old now and turns 6 in December. From contact through a number of different resources we have decided that we need to come to Johns Hopkins to be evaluated to see if Cameron is a candidate for surgery. She has experienced a significant decline in her speech and motor skills that started in December of last year. At this point she really does not communicate and rarely responds to even simple questions that we ask her. Additionally, her left-sided weakness is becoming more profound everyday. This is a dramatic change where as this time last year up to December she could communicate easily with us and really did not have any noticeable decline in her skills. We now feel she is headed down a path to be severely handicapped permanently if something is not done soon. She just got through with her 1st round of IVIG therapy at Wake Forest University Baptist Medical Center where our current neurologist Dr. Cesar Santos is located. On Friday we sent information on Cameron to Johns Hopkins based on what was requested when my wife spoke to Diana Pillas. We are pleading that we can be seen soon. We have been in contact with a number of families that had successful surgeries with Dr. Ben Carson who encouraged us to consider not delaying in looking at surgery for Cameron. Of course we are new to all this and really feel that you and the staff there can help us make the right decision if Cameron's decline is indeed due to Rasmussen's. Please take all of this in consideration to help us get in to see you and the staff there as soon as possible.