Megan's Bath-- Chapter 1

(Note: This story begins with the post dated October 13, 2009. I'm working on getting the posts to display in reverse chron order, but until then...)

The arrival of the EMTs heralded the beginning of Megan's long odyssey through an endless list of specialists-- dermatologists, allergists, ad nauseum-- with each one shaking his or her head, declaring they had never seen anything like it and writing down the name and contact information for another doctor to consult.

After several years, thousands of miles of travel, and hundreds of thousands of dollars' worth of tests , the family had figured out the basic ground rules for Megan's condition:

1. Water could not touch Megan's skin. If it did, the rash developed. Too much direct exposure to water caused the anaphylatic shock that Megan displayed at her first bath, but superficial exposure-- a few drops, say-- did not.

2. Products with a small amount of water in them, such as lotions, did not cause a reaction.

3. Megan could drink water with no ill effects, but she had to use a straw or risk an outbreak around her mouth.

This meant that conventional showers and baths were out of the question. Megan's parents seized upon any alternative they could find, from using hand sanitizer (tended to be too drying) to just rubbing her with dry cloths to using 'dry bath' products developed for pets. Nothing was a perfect replacement, and Michael and Helen were forced to limit any activities that made Megan excessively dirty. Consequently, Megan never played in the dirt or a sandbox, was forbidden to use magic markers, and had to avoid exposure to communicable disease and sweating.

Megan also had to remain at home if the weather threatened even the slightest chance of rain. Family trips to the pool and the shore were out of the question.

Megan ended up reading a lot.

Her medical bills meant that there wasn't a lot of extra money for vacations anyway. The family received a lot of free treatments and testing by consenting to Megan's participation in case studies and trials-- one of the benefits of being a medical oddity-- and she was the subject of several research papers that garnered awards and promotions for their authors. At the end of it all, however, the family was left with little more than suggestions, kind smiles, and shrugs.

"Look at it this way," said one specialist. "At least she can drink the stuff. She'd be in real trouble if she couldn't."

One puzzling revelation was the composition of Megan's genetic code. It was fairly conventional, but huge pieces of it defied comprehension. Moreover, Helen's genes, surprisingly, had the same features.

"Do you have any reactions to water, Mrs. Ursis?" asked the geneticist. "Or anything else?"

Helen shook her head.

It was difficult to determine where the mutation came from. Helen was an only child, and when asked about any other blood relatives, she informed them that both of her parents were dead and that she had no other living family members. Michael had no mutations and neither did his parents or siblings, so the researchers tentatively pinned the condition on Helen's background, but without any of her relatives available for testing, they could not be certain.

And none of them could understand why Megan had these bizarre reactions while her mother remained unscathed.

When Megan was eight, a television production company caught wind of her plight and sought permission to film a documentary. It was an opportunity to pay off more medical expenses, so the Ursis family agreed. The resulting forty-minute special ended up airing from time to time on basic cable; occasionally Helen caught it at 2 a.m. when she couldn't sleep.

One time it was shown at 9 p.m. on a Friday night. That was when seventy-two-year-old Maria Beltran, home from a long day cleaning houses, happened upon it, and ended up transfixed.

By the time the credits rolled, she was sobbing. "Ali," she cried. "You were telling the truth. You were telling the truth."