Korbin's battle against Fibrous Dysplasia

In just the past year, Korbin has been through more than anyone, let alone an eight year old child, should have to endure in a lifetime. He should be playing Fortnite  with his cousin, however he is not.  He is in and out of hospitals. His family had benefits scheduled to help raise money for his medical expenses but as you all are aware COVID-19 has cancelled those and any future plans. After Korbin’s last doctor visit, I’m not sure the benefits would have actually raised the funds as quickly as he needs them.

In July 2019, Korbin began having vision problems in his right eye.  He was referred to an Ophthalmologist in Tulsa after his eye doctor discovered that he had severely limited vision in his right eye.  Once in Tulsa, Dr. Cole confirmed Korbin’s right optic nerve was pale, which meant nerve damage, she could not find anything anatomically wrong with his eye.  She ordered an MRI to figure out what exactly was causing the problem. The MRI was performed in Elk City on Monday, August 26th. Trisha, Korbin’s mom, received a call from Dr. Cole the following Wednesday informing her that Korbin needed to be seen at St. Francis hospital immediately due to the MRI detecting a mass wrapped around Korbin's optic nerve.

Upon arriving at St. Francis Hospital, a sedated MRI and a CT scan was performed to better determine exactly what they were dealing with. Dr. Cai, the Neurosurgeon, delivered the results of the tests and Korbin was diagnosed with Fibrous Dysplasia of the skull, which is a rare bone disease that causes abnormal fibrous tissue like bone to grow around nerves. Korbin's case is very rare because it was already causing vision problems when discovered. A craniotomy was scheduled for Thursday morning to go in and remove this bone from around the optic nerve, at this point Korbin had 20/20 vision in his left eye.

That night he woke up not being able to see out of either of his eyes. It was later confirmed the left eye blindness is due to one of the many complications that can come from these types of surgeries because they are dealing with very delicate nerves. That nerve now has permanent damage and Korbin only has extremely low vision out of his left eye that was once 20/20. Thankfully, Korbin’s right eye has had some improvement, which the doctors were not expecting because the nerve is pale. However, Korbin is now considered legally blind.

Korbin’s family has taken him to numerous hospitals and spoken to several doctors to find answers for his failing eye sight.  He had a second craniotomy to remove fibrous bone from around the left eye again in the hopes it would bring vision back, but unfortunately it was not successful. He would continue to be monitored every three months for bone growth. If more bone growth is detected around the optic nerve he will endure yet another surgery and recovery period.

On June 2nd, Korbin had a follow up appointment to monitor the bone growth. The results were not what we were wanting to hear. The fibrous bone has grown completely back around the optic nerve on now the other eye, the right eye. We are being told now we are looking to be having a surgery in our very near future possibly within this month.  Now not only is his vision in jeopardy but so is his life.  He cannot continue to have craniotomies every three months.  However, if the bone is left to grow freely, it would eventually puncture his brain.  They are now looking into sending Korbin to another Shriner's hospital in St. Louis, Missouri for some potential help with medical needs for Korbin’s future.

Another viable option is the Mayo Clinic. The family hopes to travel to the Mayo Clinic soon to see if someone there might have answers for them. However, funding is a major issue. This clinic is very expensive just to get a case reviewed but we are desperate for answers. 

All of this is still very much unknown and we are constantly researching and contacting anyone who may be able to help Korbin.  Since this is such a rare disease, not a lot of doctors specialize in treatment plans for this particular disease. Korbin’s family has traveled hours upon hours just to hear, “we can’t help him.”  I know times are hard for everyone during this pandemic but to hear a mother say that her son may lose his life because they do not have the means to help him is soul crushing.

So, here we are. We are reaching out to the community for help.  Help to get Korbin into the Mayo Clinic.  Help to take some financial burden off of his family.  Help to get his case heard by anyone who will listen.  Maybe this will reach a doctor who is familiar with Fibrous Dysplasia of the skull, that we have not been told about. Please if you can, donate. If not, we understand but please share in hopes to find someone who can save this child’s life.  My nephew's life.