I have set up this fund for a young man who was one of my son’s best friends when they were young. Griffin and John became fast friends on the bus to Pickerington Elementary-2nd grade- 2009.
They had so much fun together until both families moved from the area. Not long before we left, Griffin started having seizures. Since then he and his parents Roxann and Ike have searched for a treatment, cause or diagnosis for what was causing them. Finally, after all this time - one amazingly resilient young man and two parents who never gave up and kept talking to every doctor they could until they received a referal to The MAYO Clinic and know they have an answer. Unfortunately, that answer is that Griffin will require brain surgery. This must be one of the scariest and most stressful situation any parent must deal with. Griffin’s treatment will require travel out of state to the MAYO Clinic, who finally figured it out. The cost associated with this - is not a stress they do not need which is the reason I have set up this fund. Though I am the one who started this I have no access to any of the money raised everything goes directly to the Walker's.

Because I am afraid I will not get it all correct I have included what Roxann has shared.

"We learned that Griffin has an extremely rare congenital birth defect. It has been missed all this time at multiple hospitals. Griffin has a left temporal lobe encephalocele, which is likely the causing focal dyscognitive seizures from the left temporal lobe.

So…what does that mean? Basically, it means that he has a very rare neural-tube defect. He has a bony defect of the base of his skull. It’s quite small, less than 1cm. In the photo I took of his MRI, you can see the arrow is pointing at the spot where he has the hole in his skull. If you look above and to the left of the point of the arrow, you can see that there is a little hook-shaped piece of brain tissue that is coming out of the opening. This tissue must be removed. Then, the missing bony defect area, must be closed.
They also suspect that he has gliosis in the grey matter adjacent to the encephalocele. So, what does that mean? Basically, your brain runs on glucose (sugar) and his brain is not metabolizing sugar like it should be. This is damage that has been caused by the birth defect, due to being missed.

They also believe that all of this together is causing the Left Temporal Lobe Epilepsy.

Surgery for the encephalocele is not optional. It must be repaired.

At this point, we know he will be having brain surgery sooner than later. At Mayo, they use a team approach. Our neurologist will take his case to “Epilepsy Conference” where the team of 20 or so Epileptologists, Neurologists and Neurosurgeons will study the facts and findings in Griffin’s case and then will decide the course of action/treatment. We already know this will include brain surgery.

Brain surgery is expected to be schedule within the next few weeks. (February-ish)

At this point, they are trying to decide if they have enough information to perform the surgery very soon.

-OR-

Do they need to do a second level of EEG Video Monitoring, in which they would actually do the study by attaching the EEG leads directly into his brain, rather than glued to the scalp, like we just had done again.

-AND/OR-

Do they need to do a brain mapping to look for the electrical activity in his brain to gain more information?

Since we don’t know the exact recommended surgery, we don’t have a clear picture of benefits vs. risks, more than knowing that the 2 most common risks are brain bleeds and infection. We DO know that this location is where his speech/language/hearing, behavior/emotions and short and long-term memory center reside. So, they will have to be very, very careful to only take out what is absolutely needed, without causing him more harm.

Benefits could be they remove the encephalocele, remove the damaged grey matter and repair the hole in his skull and he suffers no damage and we get complete remission on Epilepsy. (Which would take time to determine, but the outcome —generally speaking — would be that he would be seizure-free, medication-free within a couple of years. And that would be AMAZING!!!! But, again, this is speaking broadly, as we don’t yet know what surgery will be able to be performed.

On the day we find out that brain surgery would be needed, I asked Griffin at bedtime, what he thought about that, how he felt about that. His immediate and passionate response was, “Can they do the surgery tomorrow?” This brave little boy of ours. We have always called him our little miracle baby. The baby we never thought we were going to get. Turns out, he truly is a miracle. More than we ever knew."

Since this is all going to take a great deal of time and travel and add to the fact that MAYO is not in their insurance plan I wanted to do something to try and make this slightly less stressful by trying to reduce the financial aspect of this process.

The Walkers are a wonderful family and Griffin is a smart kid who has faced everything that has been thrown at him with the maturity beyond his years that some times I have to remember he is still a kid.



If you can please support this family.