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Thursday, February 28, 2013

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.


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


  1. I love reading and keeping up with your family, you are very inspirational to me and my family!

  2. I have been following your blog for awhile now and I love your positive outlook no matter what you are going through. Your daughter is definitely a rare jewel indeed. She is beautiful, just like her mama, both inside and out!

    Thanks for sharing your journey with us "strangers".

    A Prayer Warrior from Florida,


  3. Brenna is a rare beauty and you are a wonderful mom and inspiration. Keep up the great work!

  4. thank you. You are brave and wondeful.

  5. God has sent you and the world, a very special gift. Her name is Brenna. Her life will be a message to all. Thank you for sharing your family with all of us. I belive there will be many blessings coming in the future for all of you. Keep up the good job!

  6. I read about your story on the CBS site and just wanted to say thank you for sharing your family's journey. I had no idea this condition existed. People will be ignorant and rude (especially on the internet) but hopefully education and awareness will help to combat that. Your daughter is so adorable!

  7. What an adorable baby! Wishing you and Brenna the best. Science improves everyday. Good luck!

  8. She is so beautiful. As I read your story I cried. She is a fighter because her family is there for her. My she be blessed as she grows.


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