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.


6 thoughts on “LUKA

  1. Someone please help me find out more more information about this canabis oil. MY daughter also suffers from CDKL5 and would love more information if it will help her I would love to know more. I uave no clue where to start being it isn’t legal in Missouri.

  2. We are in Slovenia, our Niki will be 1 year on New Year’s eve this year and she has CDKL5. Currently wr are on 3 strong meds and ketogenic diet, but she still has multiple daily seizures. It is not illigal bit also not supported through our hospital. Please let us know about our options..

  3. My daughter is 2 1/2 years old and also has CDKL5. We have tried many meds and she is currently on 3, and still having seizures. We have tried AC dc oil but had side effects like constipation, increase in seizures and didn’t sleep at night. We are willing to try CW. Please help us, my daughter deserves a better life, and off these horrible prescription meds.

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