Rare Disease Day 2013

A "rare disease" is described as one that affects less than 200,000 people. Affecting around 100 people in the world, Harlequin Ichthyosis is definitely rare. But it is one of about 7,000 rare diseases, which affects 30 million Americans. So many among us are living with rare disease.

Sometimes I have trouble identifying with "rare disease" because to me now, this is our life and this is our daughter. There is nothing not normal about it. 

Brenna is not rare because of Harlequin Ichthyosis. She is not rare because she has a rare skin disease.

She is rare because she has been a fighter since she was born. The word we heard most often in the NICU was "spunky."

She is rare because she has defied the odds, every day of her life.

She is rare because her sparkling blue eyes show off her soul.

She is rare because of the way she loves with her entire being, clinging to her mommy and daddy and brother. There is no physical proximity that is too close for Brenna.

She is rare because she sleeps like a teenager at 14 months old :)

She is rare because she inspires so many every day.

She is rare because she can pull off a hat or headband with so much style, even the world-class models are jealous :)

She is rare because she is our daughter. Our one and only. And we are more proud of her than we could have ever imagined.

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If you are reading for the first time, thanks for sharing our story! You can see photos from Brenna's first year here, and you can read more about our family here.