An Update And A Tribute

I’m working on a blog redesign today…in between Tyler’s first water polo tournament, my brother being in town, and still needing to unpack from my vacation. Clearly I am a glutton for punishment.

Instead of my own post tonight, I wanted to pay tribute to a remarkable young lady who I first heard about on the Discovery Channel.

Shiloh Pepin was a 10 year old girl from Maine, born with sirenomelia, also known as ‘Mermaid Syndrome.’ When I was first out of college, many years ago, I worked at the UT Health Science Center Genetics Clinic as a social worker. I learned about, and witnessed, countless adults and children who had that ‘one in a million’ syndrome or medical disorder. Sirenomelia was something I was familiar with from my social worker days, and Shiloh’s story caught my attention when it was first profiled a year or so ago. This disease is extraordinarily rare; I believe there are a handful of children who have survived at all, much less as long as Shiloh did.

What struck me about Shiloh was that she was just absolutely full of spunk. She had a terribly difficult condition (imagine spending your entire life, connected from the ankles up) but seemed to let nothing stop her. The last episode I saw, she learned how to swim, an amazing accomplishment if you think about what that must have taken. She also struggled with the decision on whether or not to separate her legs, and ultimately decided not to separate, and that she was happy with the body she was born with. Trust me, if you saw the show, there was no doubt she was perfectly content in her body, exactly as it was.

Shiloh died this weekend, from what I can tell, after a sudden onset of pneumonia.

I can’t imagine what her parents are going through, they were absolutely devoted to their girl. For all the strength that Shiloh embodied, her parents were just a teeny bit stronger for her. It seemed to me that the three of them chose each other.

But I can say that just from watching Shiloh’s story, I know she touched many, many lives and would want to be remembered as a smart, tough, cute girl.

If you get a chance, I encourage you to read about her story, and take some of her strength with you.

Here is a video clip of her story:

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