May 1, 2013

3rd birthday

Today, our sweet Sienna turns 3!

I asked Sienna what she wanted for her birthday last week, and she calmly gazed into my eyes and said “All I want is a cure.”

Yeah… that didn’t happen. She’s turning 3.

Instead, while going back and forth between “cooking” a bowl of colorful beads in her toy kitchen and trying to climb the couch while I chased after her shouting “be careful” and “slow down,” Sienna told me she wants candy and toys and books and ladybug dresses and a pony and a giraffe and dog treats for Pepper and a kitten and 4 MILLION Hello Kitty Band-Aids. We’ve narrowed down her birthday wish list to something more reasonable for a 3-year-old, and she has been showered with love and a ladybug-shaped birthday cake.

But what Sienna really wants is to be able to run wild without being told she has to slow down – to play sports, to be independent, and to twirl, and twirl, and twirl until she falls down. (Falling down would be a major crisis as any trauma could trigger an FOP flare-up, resulting in irreversible bone growth and permanent loss of movement.)

If anyone would like to celebrate Sienna’s birthday with us, please, so that she and the approximately 700 other FOP patients worldwide can get one step (or twirl) closer to a cure.

Big birthday hugs to all of you from 3-year-old Sienna!

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