Life with AMC and Too Tuff Timmy

Tomthy was born with Micrognathism syndrome which is a underdevolped chin so his tounge is to big for the smaller lower jaw falls back in his throat and hampers his breathing and its part of his  Arthrogryposis Mutiplex Congenita syndrome which is a rare congenital disorder that is characterized by multiple joint contractures and includes muscle weakness and fibrosis. It is a non-progressive disease. Due to his low muscle tone through out his body he is unable to swallow so he is fed by a mickey-button through his abdominal wall into the stomach.
Without being able to swallow makes his acid reflux and any upper body secretions hard for him to handle at times and we have to suction him or he can choke or aspirate into his lungs and cause phenomena. He has physical therapy daily and has AFO (ankel foot orthodics ) he has to wear on his legs daily to keep them straight. He has three major specialist appointments in Portland November 20th and the 21st is very important appointments for him. GI to figure how to stop the reflux and tube problems ,neurologist for 6 month follow up ,and pulmonary to help with breathing issues in the cold win

Donations

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  • Anonymous 
    • $25 
    • 69 mos
  • Anonymous 
    • $20 
    • 69 mos
  • Connie Mussari 
    • $50 
    • 69 mos
  • Anonymous 
    • $10 
    • 69 mos
  • Anonymous 
    • $50 
    • 69 mos
See all

Organizer

Carolyn Miller 
Organizer
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