Fight like baby Bash

Sebastian was born with a very rare neurological condition that is leaving the specialist baffled. Neurologist, Genetic Specialist, GI, Endocrinologist and Ophthalmologist at the University of Iowa's Children's Hospital are all working together to try to give this condition a name. This condition is causing Sebastian to have many health issues. He has been diagnosed with Microcephaly, which is an abnormally small head. The skull grows when the brain grows, this means Sebastian's brain is not growing at the rate it should. This is causing Sebastian to mentally slow like if he was to have down syndrome. He has now been diagnosed with Infantile Epileptic Encepalopathy which is getting worse by the weeks, according to his EEG's. The neurologist are now treating this very aggresively, for fear it will continue to get worse. He is now on a strong liquid steroid, but the next step if this doesn't work, are a series of daily steroid shots. It has caused him to become very irritable, and without the medications he screams from morning until night. This conditon has also caused Sebastian to be diagnosed with Muscle Spasticity, Myoclonus, Impaired Swallowing, Failure to Thrive, Nystagmus, other abnormal eye movements, and imparied vission. In non-medical terms these conditions cause Sebastian's arms and legs to be stiff due to too much tone. He has a weak trunk so he can not support or hold himself up. He can not hold his head up for more then a few seconds when laying on his stomach. His nerves and reflexes are very sensitive which cause his legs to shake uncontrollably. On 7/11 he had a swallow study done, the thicker the liquids the more liquid went into his voice box. His appetite has begun to decreased so a NG tube is being used for some of his feedings, but a G tube is being discussed in two weeks. Soon the specialist are going to begin a genetic panel that test all of his genes to see if we can put a name to this condition. Thank you all for the love and support!
  • Anonymous 
    • $20 
    • 79 mos
  • Seth Martin  
    • $20 
    • 79 mos
  • Anonymous 
    • $50 
    • 80 mos
  • Seth Martin  
    • $20 
    • 80 mos
  • Art Jester 
    • $50 
    • 80 mos
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Organizer

Melissa Point 
Organizer
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