I had the opportunity to photograph this special little guy. He has sure gone through a lot in his 2.5 years old life. www.beatingepilepsy.blogspot.com If any of you would like to donate or help in any way I’m sure it would help them a lot:)
My name is Cole. I am 2 years old. I was a healthy little boy…pointing, saying mama & dada and waving…until 10 months old when I suddenly developed “A-tonic drop seizures” in August 2009. My world suddenly changed as I had 100′s of seizures a day. After I started having seizures, my brain couldn’t keep up and I was diagnosed with severe brain disorder called “Epileptic Encphalothopy” and started regressing developmentally….I stopped pointing, waving & saying mama & dada. I don’t talk anymore…and I get frustrated so I cry a lot. I am developmentally a 10 month old & a 20 month old motor wise…but I am really 2. I started the Ketogenic Diet in 2010-2011, it helped 75% of my seizures…I was a trooper and was on it for 1 year. I am now taking Keppra, Zonegran & Topamax (currently weaning). I’ve also been diagnosed with “Irretactable Epilepsy” meaning that my seizures are being treated, but they aren’t stopping. Doctors call me a “complicated” case and don’t know how to help me. As of February 22, 2011…I went to the Cleveland Clinic & amazing drs found out the left side of my temporal & occipital lobe are malformed. This happens in utero and is a genetic mutation. I’ve had some genetics test done, but so far they can’t find the mutated gene…we are praying they will, so I can know if my future brothers and sisters will be at risk. I will be getting surgery sometime in May to remove my left temporal & occipital lobes to HOPEFULLY stop my seizures and help my brain to re-route it’s self so I can learn. I will be going Ohio for about 1 1/2 months to recovery & go through therapy. I will go back to Ohio again, 6 months after my surgery too see how I am doing. My dr. says Brain Surgery is a “leap of faith”, because you never know the out come.