Caden's NF2 Journey

My name is Gina Salter from N.C. and I have started this Go Fund Me page for my nephew Caden Willis. Caden is 11 years old and suffers with an incurable disease called, NF2 (Neurofibromatosis).  NF2 is a genetic disorder that causes benign tumors to form on the nerve tissue. Shortly after Caden turned 3 he was diagnosed with croup 12 times over the next year. After multiple visits to doctors, a physician at Rex hospital in Raleigh N.C. believed for it to be his adenoids.  Although the removal of his adenoids was successful the doctor found a tumor on his airway. At that time he was referred to UNC to an ENT specialist.  He had multiple surgeries on his airway to remove the tumors but unfortunately the tumors would return. 

Several years later after numerous surgeries a decision was made to have a trache placed on 9/11/16.  Shortly after the placement of the trache an MRI was ordered by a different ENT. The MRI confirmed 3 more tumors were on his airway along with a tumor pushing on his spine and one on his chest.   A team of physicians then collaborated and decided he needed to have a full body MRI which confirmed 2 bilateral shwannoma tumors on his brain.  On 1/12/17 (5 years later) after multiple surgeries, countless doctor visits and no diagnosis;  Caden was finally given a diagnoses of, NF2. 

Once a year he has a full body MRI to monitor the growth and characteristics of the tumors on his brain.  Not only has the tumors on his brain increased in size but new tumors have developed in other areas of his body. 

The time has now come for Caden to have the tumors on his brain removed. Although the family has complete confidence in the physician's at UNC there is no one there that specializes in the surgery that needs to be performed.  Caden has now been referred to Dr. Rick Friedman in San Diego, California. He will only have the tumors on the left side of his brain removed and if all goes well 6 months after the initial surgery, he will return to C.A. to have the tumors on the right side removed. His pre-op is scheduled for 10/21/20 and the surgery will be 10/22/20.  He will have his surgery at UC San Diego and he will then be transferred to Rady's Children's Hospital where he will recover.  On 11/2/20 he will have his post-op. If all goes well Caden will be able to return to N.C. and continuation of care will be monitored by his local PCP.   The urgency of this operation is to prevent Caden from going blind and/or deaf because of where the tumors are located this could happen at any given moment.  Caden's only request is, "don't let me go deaf." 

We all know a trip like this can become a huge financial burden to carry, with the cost of, plane tickets; hotel fees; food; and other necessities.  I and the family will be forever grateful for any contribution given to Caden's Journey.  All contributions will be accepted from 9/3/20 - 10/12/20.  A separate bank account has been opened at the State Employees credit union specifically for Caden's NF2 Journey.  Please keep Caden, the family and physicians lifted up in your prayers.