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Zaki and Raja
Zaki playing xbox with brother during his 72 hour EEG at Denver Children's
We have witnessed the blessing of Zaki having his own dog. This blog will detail the journey we are on helping our son Zaki to have an amazing quality of life by assisting him with a service dog! Thanks for reading!
Best Buds!
Zaki and Raja
Zaki's Journey
Zaki is believed to have Myoclonic Astatic Epilepsy (MAE) or Doose Syndrome. This is a rare neurological condition that falls into the catastrophic epilepsies category. This disorder is believed to be genetic affecting more than one gene but they do not have a genetic test to identify it as of yet. As Zaki’s neurologist says it is like trying to put a square peg in a round hole, with a diagnosis at times. He fits most of the markers for the syndrome, and for me, I would rather have a ‘name’ for what we are going through than not. He started having seizures at 4 months, which is earlier than typical with Doose. He is now 6. With the exception of two brief seizure free periods, he has had daily seizures. He suffers many different seizure types, and the epilepsy seems to morph over time so that we are dealing with something totally new. This is why we not so affectionately call it the beast. Zaki’s seizures are generalized (happening all over the brain, without a focal point )We started with myoclonic (jerks), then added astatic (drops), He has had episodes of Non-convulsive Status Epilepticus (during NCSE – the brain stays in an excited seizure state, sometimes for days), He has thrown in the occasional Tonic- Clonic (formerly Gran-Mal, convulsing), Eyelid myoclonia (looks like eye fluttering), and absence (staring spells). Please see the video below to see many of the seizure types, or check out http://www.epilepsy.com/epilepsy/types_seizures for a description to learn more. Currently he has myoclonic, and absence. Zaki also lives with delayed development and autistic characteristics requiring 24/7 line of sight care. At his worst I would stop counting at 250+ seizures a day. Zaki has had over 500,000 seizures in his short life, and failed over 14 medications, and the ketogenic diet to try and control his seizures. One medication leaving him with cataracts, and the current one leaving him unable to sweat. Epilepsy has greatly affected his entire life, and ours as a family. We focus on providing Zaki with the best quality of life with the hand that we have been dealt. We feel a service dog will really help Zaki with his sensory issues, social limits, and developmental and educational goals. He and Raja have already begun to bond, and it is really a special thing to witness. Thanks for educating yourself about epilepsy and being interested in Zaki’s journey. You can contact Heather, Zaki’s momma at jackson6542@msn.com She helps to facilitate a parent’s support group in Colorado Springs, and also does school staff/children presentations in her community, changing the stigma that people with epilepsy live with daily!
Must See Video
Emmett and Zaki have the same syndrome. Fortunately Emmett is in remission! Emmett's momma started a non-profit for epilepsy. You can see all the different seizure types that Zaki has on this video...
Watch Video
Watch Video
Zaki and Brother Zarek
Zaki playing xbox with brother during his 72 hour EEG at Denver Children's
Loved reading about your family. We both have such special sons. Great to see what an advocate you have been. Such a handsome family!
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