Worth his weight in Gold

He's a big little boy. Bright eyed, well spoken, full of smiles.
"How are you today?" I asked.
"I'm fine thank-you" (Can I just this point out that very seldom does a child respond to any kind of questioning - let alone with such beautiful english and manners. They usually bury their faces in their parents arms or take one look at the stethoscope and identify you as an enemy.)
"You can't be that fine if you're here" - referring to the short stay ward where I'm working this weekend.
And there it is - a big goofy smile.
"So what's the matter?" I ask.
"I've been struggling to breath and my chest hurts"
"Since when?"
"Since about Thursday."
"And have you been coughing?"
"Yes - yellow phlegms"
"And fever?"
"I think so."
"How old are you now?"
"I'm 15" - goofy smile.
"And are you in school?"
"Yes."
"What grade?"
"Grade 8."
"And what's your favourite subject?"
"Maths"
"Oh - you're one of the clever boys!"
A bashful version of the goofy smile appears.
"Ok lets have a look."

He doesn't look 15... maybe 10. And at first glances in the ward you might mistake his crumpled frame for a CP child. There's absolutely nothing wrong with his brain though.
He's got SMA (spinal muscular atrophy) type 2 - a slightly less lethal type than type 1 which is fatal before 2 years of life in the best settings. Type 2 causes progressive muscle weakness and paralysis of the body due to a defect in anterior horn motor neuron cells of the spinal cord. (Basically the cells that control the nerves that control your muscles.) It's a genetic condition for which there is no cure. Most of these kids live not much further than their teens - mostly battling pneumonias there whole life long until eventually one cannot be beaten.

This little guy can no longer sit unsupported and he has very little use of his arms. He has a scoliosis which is compromising his already diminished lung function even more. His chest is badly deformed - I can hardly think there is much lung tissue on the right hand side.
He's got a raging pneumonia - but he's perky and chatty and polite.

While I draw blood and put up a drip he asks "please don't put it in my right arm because I can't write with it then." He moans that I'm not using the smallest needle and when I don't hit blood the first time he calmly suggests "maybe you should take it out and try again."

He is an absolute treasure. Worth his weight in gold and equally resilient in the face of the heavy hand that life has dealt him.  It breaks my heart and warms it all in one beat.
These are my favourite kind of patients.