Luka is a sweet, easy going 3 year old boy, he started having seizures at 5 weeks old while mommy was holding him. We called his doctor and told him what was going on. He said to go straight to the ER, while in the ER Luka didn’t have a single seizure, so they kept asking the same questions over and over again, like they didn’t believe us. Anyway, they transfer us to the Levine Children Hospital and at around 10:00 p.m. that night he started having myoclonic seizures one after the next, he had 10 seizures in 2 hours, they finally put him on his first anticonvulsant (keppra). We spent his first Christmas in the hospital.
First, he was diagnosed as having Infantile Spasms, we spent numerous times in the hospital, sometimes because of out of control seizures, some other times because of bad side effects with medicine. So far, he has been on 13 medicines and we tried the ketogenic Diet without any success.
Finally, at age 2 we had his diagnosis of CDKL5, this gave us more questions than answers since this syndrome is fairly new, and not even the neurologist could give us any details on what to expect.
This year 2013, CNN knock on our door with this amazing documentary about medical marijuana. My husband and I looked at each other and knew that we had to do it. Now, we are here in Colorado, away from friends and family, but with a single purpose, to give Luka a better quality of life and for CW to give us our son, the one to play soccer with daddy and bother his big sister and to give mommy at least a big smile, the one I have been waiting for, for 3 years.