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Butterfly child: Stretching supplies is necessary concession for the White family

Posted 11/08/16 (Tue)

Butterfly child: Stretching supplies is necessary concession for the White family

This is the conclusion of three parts.

By Cecile Wehrman

Along with daily bandage changing, doctors want Elizabeth White, 10, to be bathed daily to cleanse her sores and prevent infection from a genetic disorder, epidermolysis bullosa (EB).

Her mother, Jenny, manages the time-consuming bath protocol only three or four times a week, but she says doctors know time isn’t the biggest consideration.

“Her sores drain so much fluid out of them,” Jenny explains. Some weeks, “we can get away with three baths, if we can manipulate pads . . . they know that it goes by how much we can get in supplies.”

Between the steps it takes to get Elizabeth ready for the bath and all of the chores that must be performed around the house while Elizabeth is in the tub, Jenny’s self described “OCD” goes into overdrive.

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