Half of brain removed

March 18, 2017 at 12:15pm our 12 year old son had a tonic clonic (grand mal) seizure out of nowhere. Over the next few months he started having more and different types of seizures everyday. It was scary to watch helplessly as our son had seizures, and when we weren’t there it was scary to know he may injure himself. Our first neurologist gave anti convulsant meds, one after the other, but they weren’t responding and seizures increased. After 5 months of trial and error, testing, and not really knowing if this was epilepsy or something else, we were finally referred to another neurologist and he gave us the diagnoses of Rasmussen’s encephalitis a very rare disease. Rasmussen’s encephalitis is an autoimmune disease that causes the body to attack the brain causing brain atrophy, seizures and other deficiencies. If left untreated it will cross to the other side of the brain and cause death. We were told that immune suppressant therapies like IVIG and steroids would slow the progression, and would buy him time before having to make the heart wrenching decision to have the brain surgery, the only treatment that will stop it. This surgery (hemispherectomy) will mean completely removing 2/3 of the left side of his brain. He will then have only half a brain working. The left side is his dominant side which means language will be affected negatively especially cognitively. He will have permanent hemiparesis on the right side meaning he will lose all ability in his right hand permanently, have a weakened right leg, and require a wheel chair and a leg brace on his right leg so he can walk. This surgery has a 70% chance of seizure freedom after. That is what we are hoping for most of all. That alone would up the quality of his life! Oct. 2, 2018 Taylor had the 10 hour long surgery and has a long road of hard work ahead of him. It has been round the clock rehabilitation involving, getting dressed, learning to walk, speech, learning to use his left hand, physical therapy, and relearning basic tasks. There have been many added costs associated with our sons recovery. It’s unimaginable that something like this would ever happen and the extra added costs of everything that encompasses our new norm is an added blow to an already catastrophic situation. We do not know exactly how much financially we will be pushed further. We will do anything and everything to help our son succeed. This will be a life long effort and the biggest financial costs thus far have been overwhelming. Any help would mean so much.

Donations (0)

  • Anonymous 
    • $200 
    • 9 mos
  • Christa Mcinnis 
    • $50 
    • 11 mos
  • Errecca/Vance Cail 
    • $500 
    • 12 mos
  • Brent Edwards 
    • $100 
    • 12 mos
  • Teacher Diane 
    • $50 
    • 12 mos

Organizer

Laura Manthey 
Organizer
Beaumont, AB
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