Monday, January 14

i got to hang out with a neat little girl the other day. she was born with hurler's syndrome, a rare and often fatal disease resulting from a lack of enzymes in her body. usually children die by age 10, but alana is showing major improvement after a stem cell treatment.

she's the first person i've met who's had a stem cell treatment. it's always seemed like a promising science just over the horizon; cures "to-be" if only there were more funding for research, less opposition from conservatives. but here she is, a bubbling four-year-old fighting a death sentence.

the disease has left her with an enlarged head, swelling of her throat and lymph nodes (that necessitates a feeding tube), a heart murmur, slight dwarfism of her limbs and some developmental delay. what the disease has not claimed is her outgoing personality, her goofiness, her penchant for twirling around and falling on her face like a ham, her vivid imagination and infectious laughter.

for the first 90 minutes she played by herself with dolls, baking imaginary meals, drawing pollock-inspired masterpieces. she ignored me for the most part. until she needed someone to play the part of sponge-bob in an underwater adventure with the little mermaid. i had enough photos at that point and knew i had to leave in another half hour, so i picked up swiper and we played. when i finally had to go i got a big hug and kiss. i hope she keeps getting better. she's a great kid.

the underwater adventure was staged on my knees. sponge-bob, swiper, and dora the explorer were looking for the little mermaid.

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