For I consider the sufferings of this present time are NOT worthy to be compared to the GLORY that is to be revealed in us. Romans 8:18
This is an extremely rare syndrome of the brain and respiratory tract malformations. The thumbs are adducted and do not extend. Hypotonia is a symptom swallowing and breathing problems from the respiratory malformations.
No treatment is available other than therapies that include supportaive care, aspiration prevention, resiratiory care. We have multiple Doctor’s/Specialist’s that includes neurologist,neurosurgeon, pulmonolgist, GI, Stomach/Liver, Orthopedic, and the list continues on.