It has been almost two years since Ryan’s surgery and implant placement. So much has happened in the past two years! Ryan still has seizures. His seizures are still ever-changing. However, overall, I would have to say they have reduced. He seems to have either myoclonic jerks or tonic clonics but he is not having both between implant adjustments. Also, when he is only having tonic clonic seizures, he is going about two to four months between seizures. While this is amazing, I find myself, as Ryan’s wife and caregiver, waiting for the other shoe to drop and it eventually does.
In the meantime, we have made our dream come true! We have officially turned ROC Stop Seizures into a 501(c)(3) nonprofit entity! We were able to kick-off this great news as a vendor at the Longwood Community Health Fair. Now, we are in the planning stages for various fundraisers so that we can give back, help raise awareness for those with Epilepsy and battle-induced seizures, and aid others in increasing funding, research, and education for Epilepsy.
Our biggest event that we plan to have in for the year 2022, is ROC’s Journey of 1000 Miles, when he will walk from Longwood, Florida to Fenton, Missouri. We will soon being posting and promoting sponsorship opportunities and recognition levels. We look forward to having friends, family, and the public help us to raise awareness for those with Epilepsy and Veterans with Battle Induced Seizures.
With all of the unknowns and the seizures that seem to be never-ending, Ryan and I have spent considerable time preparing for this amazing walk. Not to mention the time and effort Ryan has put in training for it, even when he is having issues with his Epilepsy. His dedication is fuel for both of us and helps distract me from waiting for that other shoe to drop as I have been doing these past few years.
As always, we appreciate the support of everyone. We are now on Facebook, Instagram, and Twitter so please look for us on there and follow us, if you are not already, to get updates on the Journey of 1000 Miles and ROC Stop Seizures, Inc., a non-profit entity.