Hello Everyone!

I never thought in a million years my child would be in this situation. Epilepsy is a cruel thing. It deprives a child in so many ways, leaving them scared and unsure of what just happened.

Clinton was diagnosed with epilepsy when he was just 2 years old. I had thought he had been having seizures for his first year, so I sought medical advice. They were every few months and weren't too bad at first. He had several tests done, EEGs, and an MRI, and nothing was determined. Then, it took a seizure bad enough at daycare that he went straight to the ER. There, they decided to admit him for a 24-hour EEG with the neurologist on call to figure out what was going on. Within 6 hours, the doctor came in and said we didn't have to go the full 24 hours. He knew exactly what was going on. Relief. We finally felt we had a diagnosis and could breathe. Clinton could finally feel better--or so we thought. The neurologist first stated that he has issues with the frontal lobe, the left parietal region, and the right parietal region. He was diagnosed with Todd's Hemiparesis. He would have these seizures while he was sleeping, and they would be very violent. After, he would wake up with paralysis over half of his body, including his head--unable to walk or even hold his head up. He would also have vomiting until it all resolved. Then, he developed what we thought were absence seizures. Then, a new seizure appeared that was more traumatic than what we had had before during his wake hours. We went from seizures once a month to now almost daily! The doctor added a new seizure medication to the mix. We were hopeful that that would stop the seizure activity. Still, the seizures have continued. Last year, Clinton had a cluster of over 21 nearly back to back. He had to be taken via ambulance to East Tennessee Children's Hospital in Knoxville. The doctor there told us that they were just cluster seizures and those happen sometimes. Not for Clinton. Not before that day. They were terrifying. Clinton has gotten to know about when a seizure is going to occur and can tell us now sometimes. He will say his head is dizzy and that he feels like he is spinning around. We know one is coming then. All we can do is make him comfortable. As parents, there is nothing harder in the world than seeing your child sick and being unable to help. It's a terrible feeling.

After his cluster seizures, we would not accept that they were "normal" for someone his age with epilepsy. I made a call to The Cleveland Clinic for their Pediatric Epilepsy Center. We prayed hard that they would accept Clinton into the clinic and that we would find answers for our boy. We got the call that he was accepted and tears of joy just overcame us. We thanked God for opening this door for us to help our boy and find the answers we need.

We received a call from The Cleveland Clinic that they would like to see Clinton on September 23rd--so much faster than we anticipated.

But, GOD.

God provided a way for us through friends who have become family. Who love our boy like a grandson, nephew, and friend.

After our last visit to Cleveland in September/October 2024, we were hopeful to have answers. We were there for 10 days—initially meant to be three. He had several tests and labs run and as you can imagine, it was practically traumatizing for him. We all tried to make him as comfortable as possible.

Flash forward, he was diagnosed with Refractory Epilepsy meaning he doesn’t respond to seizure medication and that more than two have failed. He is on his third type now. He also has Generalized Epilepsy meaning he has epileptic activity over his whole brain and not just a specific area. The Refractory Epilepsy makes it hard to treat and pinpoint with the Generalization as well.

After we returned for some time, Clinton had labs to see how this medication was processing in his body since seizures continued. His body is only absorbing less than 1/4 of his daily dosage. Seizures had stopped at night, but now they are back and more frequent. Daytime seizures are sporadic. Sometimes they come out of nowhere with no signs.

I reached out again to Cleveland for another follow-up. His neurologist’s office called this past week at the end of May wanting to see him June 25th for additional testing and more inpatient monitoring.

We also have a second opinion scheduled in November with Vanderbilt in Nashville.

We want answers for our little boy. We don’t want him to have to suffer and be in pain and scared. We will find answers. We just have to advocate for him and that’s perfectly fine with me.

These trips have added a financial strain on our family as we just had to move due to our rental being sold 6 months into the lease we had. So, we had to use the money saved to pay for a new home—deposit for home, utilities deposit, and first and last months rent. My husband works part-time for our church, and I work for commission only at my current job.

We know GOD will provide. He always does. We have to give it over to Him and trust Him.

We know that God puts certain people in our lives for a reason, also. We have been blessed with an amazing Church family and friends.

If you are able to donate anything at all to help in our efforts to travel to and from Cleveland and Vanderbilt over the next few months for Clinton, we would appreciate it so much.

The funds will go towards our travel and expenses as well as anything Clinton needs to help keep him happy and comfortable. We will be off work with no pay on these trips no matter how long they take so our housing expenses as well. 

We thank God every day for Clinton. He is such a blessing to so many people every single day. His smile and laugh are our greatest joy! He loves everyone, and I think everyone loves him to pieces!