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Butterfly child: Family is centered around dealing with epidermolysis bullosa health impacts

Posted 11/01/16 (Tue)

Butterfly child: Family is centered around dealing with epidermolysis bullosa health impacts

This is the second of three parts.

By Cecile Wehrman

A lot of blended families can probably identify with the love story of Jenny and Randy White.

Randy had a daughter from a previous relationship who was only about a year older than Jenny’s infant son, when the pair met. Two-and-a-half months later, Randy and Jenny married.

That was 16 years ago, and they have been committed to each other ever since, though they have lived separately much of that time. To understand why, it is necessary to grasp the complex set of circumstances they live with every day to battle the genetic condition, epidermyolysis bullosa (EB), that afflicts their youngest daughter, Elizabeth, 10, and the financial realities of her medical care.

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