pre mature


After the devastating news received at Johns Hopkins we were able to schedule another appointment with an SMA Dr. at Stanford, Palo Alto.  Dr Ching Wang explained the need of a G-tube, Nissen, Cough Assist, Suction and BiPAP machines (there is a section explaining these surgeries and machines).  Since we live outside the USA he was able to talk to Amanda’s pediatrician about his hydroxyurea clinical trial, and we started Amanda on this drug at 3 months of age.  This drug is currently being trialled and results are not conclusive yet. In my honest opinion I do not think it makes much of a difference, but we have nothing to lose, so Amanda will probably take it for as long as she lives.

We left Stanford with some more hope and determined to help Amanda live a more comfortable life in hopes that a cure would come soon.

At San Francisco, California

At Stanford University

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