Caleb's Story

To start off my story of my son's battle with Epilepsy, I'd have to begin with telling you a little bit about my son.

When my son came into my life on June 15, 2007, it was like I took my first breath right at the same time he did! I call him my little sunshine because that's exactly what he is to me. He brightens up my day no matter what is going on. He can always make me smile and most definitely can always make me laugh! His most favorite thing to do is make other people laugh. He has the warmest heart for a child his age. He honestly seems to care more about others around him than himself and would give the shirt off his back if he thought it would you feel batter at all! One of a kind in my eyes. Even more so now than before his 2nd birthday, which is when our lives changed as we knew .

Caleb had a 2nd great birthday. His party theme was Nemo because he was obsessed with Nemo at the time. We had a pool party which was so much fun. I couldn't believe a whole year went by and my baby was another year older. Later on the in the very same week the last thing I could've ever expected happened.

The day started off just fine and Caleb appeared to be his normal, happy little self. He played with his sister all morning and I decided to put them both down for a nap in the afternoon. Caleb was so tired he didn't put up a fight and went to sleep in his room.

About 30 minutes later, I happened to have been walking by his room when I heard him scream. Of course, I ran in to see what was wrong and found him throwing up. I ran over to him to help him and as he stopped vomiting, his eyes rolled to the back of his head, and his whole body started jerking and shaking. I had no idea what was going with my baby. I had never witnessed a seizure and for some reason...even seeing it happen... it didn't occur to me that he was having a seizure. I held him and just kept calling his name, screaming! Holding him, I could feel he was running a high fever. Thankfully, my husband had just come home from work so he was able to stay with our daughter while I picked Caleb up, got him the car, and rushed him to the ER.

I was a total wreck. In the car on the way there, Caleb kept passing out. He was a total zombie when we got to the hospital. The doctor told me he was in a postictal phase and that his seizure was caused by his high fever.

A seizure?! I can still remember the feeling of my heart sinking. I was completely unclear on what that meant but I knew a seizure wasn't a good thing. It took Caleb 2 hours to come out of his postictal stage and 3 hours before we were able to head home. Needless to say, Caleb didn't leave my sight for the rest of that night. I was immediately on the computer looking up anything and everything I could on seizures to educate myself on what happened. I would say I got my first degree, that night, on seizures.

According to the doctors at the hospital, the seizure happened because of a fever and Caleb most likely would not have any more. 2 days later, Caleb had another seizure....

This time we went to our pediatrician who ran every test possible. Everything came back fine but the seizures were still happening. By this time I was a complete wreck! We were referred to a neurologist and by the second appointment my husband and I were told that Caleb has epilepsy. Again- that sinking feeling in my heart! Again, I had no idea what this meant for my son. And again, I immediately started researching everything I could on epilepsy. I got my PHD in seizures and my medical degree in epilepsy that night!

We've tried Caleb on different medications since then but haven't had much luck. Some tend to make his seizures worse at a certain dosage. Caleb has had a bunch more tests and a few video EEG's but as of yet, no definite diagnosis of where in his brain his seizures are coming from.

We are now looking into other options such as surgery since Caleb isn't responding to the medications.

Caleb is now 3 1/2 and it's been a year and a half since this battle began for us. In that year and a half we've taken a lot of hits but we've gotten right back up again. Caleb has shown me what strength is. I'm in awe of his bravery, even more than that, I'm in awe of his heart!

I started a facebook page for Caleb as a way to reach out to others who are fighting the same fight, to shine a light on childhood epilepsy, and to help spread awareness. For his 3rd birthday an approximate 700 people across the globe wore purple just for Caleb! How heartwarming to know that we are not alone!

On his birthday Caleb also received an EMFIT movement monitor from the Danny Did Foundation. Earlier that week I had received a call from Tom and Mike Stanton saying they read about Caleb and wanted to send a monitor. Up till that point, Caleb had been sleeping with me because I of a scary incident where I walked into Caleb's bedroom one morning and found him pale and his lips blue from lack of oxygen. He had a major seizure in his sleep! I had just read about Danny Stanton's story the week before and honestly believe that little Danny is Caleb's guardian angel. Had it not been for Danny's story and the information on SUDEP, I may not have been so alert to Caleb that morning when he didn't wake up at his usual time!

The support from the 700 people and the Stanton's on Caleb's third birthday made up for his second birthday and was a perfect way to start another year of Caleb's life and put behind us the year we could've never expected.

As mentioned, Caleb's seizures are still not controlled but we have become more aware and alert to his triggers and signs of oncoming seizures. Sadly, so has Caleb. He knows how he feels before a seizure and thankfully lets me know if he can in time. In spite of all the seizures, tests, doctors, and let downs not once has Caleb let Epilepsy hold him down in any way. He still gets out and he plays! He laughs and makes other people laugh just like he did before this all started! We will never give up our fight against Epilepsy, no matter what it akes or how long it takes, we will keep fighting for ansers for Caleb and every other child and adult battling this same disorder.

Epilepsy took the wrong child when it chose my son... he gets his stubborness from me so there is no way I am going to stop fighting my son's battle! I will be right beside him, his Daddy will be right beside him, and his Sissy, Cait, will be right beside him... the whole way! We won't let another moment be lost in our son's/brother's life because of a seizure. Caleb is our HERO!

Rachel Donelson (Epilepsy Advocate and Caleb's Very Proud MOM!)