DAILY LIVING & MOBILITY

Superbaby with Sacral Agenesis

Rare Disease & Syndrome

Jett and Amy McNamara

Jett is one of the happiest kids and nothing bothers him, even having 5 operations in is short 3 years

Our Jett was born with Sacral Agenesis which means the bottom of his spine is missing. He also has no calf muscles and feet are very deformed. We were told he'd never walk and this was devastating news one week after Jett's birth. He also has no feeling to urinate or bowel movement so he needs catheters and enemas. But Jett has defied the odds and walks with a frame for short periods and a wheelchair when he is tired. He walks a lot with his hands which he calls 'monkey walking'. He is one of the happiest kids and nothing bothers him, even having 5 operations in is short 3 years. Jett is a true true inspiration to us, and has made us better people for it. I love him so very much and he is our “superbaby”, a nickname from birth.

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