Living with Spinal Muscular Atrophy

luncheonmeat has just returned from G’s end-of-year cum Christmas party at her place. It is always held at G’s place because G is immobile. G’s mother, a remarkable woman, takes great care of G and always has.

G has chronic infantile (Type II) spinal muscular atrophy (SMA). (Emedicine – SMA). She has never stood. Currently in her third decade of life, G has severe scoliosis impairing her respiratory function, rendering her unsuitable for general anaesthesia. This makes it impossible for her to get her spine straightened or to have a percutaneous endoscopic gastrostomy (PEG) tube inserted. Instead, she is on permanent nasogastric tubes as G cannot swallow and protect her airway. G requires continuous positive airway pressure (C-PAP) at night and is on oxygen supplementation via nasal prongs. Her movement is largely restricted to her fingers and hand, while the rest of her musculature had atrophied long ago.

G has a thriving online business selling clothes and gifts. Her hobby is collecting Barbie dolls. During her birthday parties, G’s place is so crammed there’s hardly any room to walk.

The choice to give up? Quality of life? It’s what you make of it. And G made the decision a long time ago to live, and to live well.

While at G’s place, it was discovered that luncheonmeat is an absolute beast at Jenga Extreme, with zero losses.


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