Monday, February 29, 2016

February 29th is Rare Disease Day -- Share the Knowledge!

It's Rare Disease Day! Celebrate by watching and sharing my daughter Joanna Reasoner's video about Klippel Feil Syndrome and what it's like living with a rare disease. 

6 comments:

  1. I watched this again today, and continue to be amazed by Joanna's spirit and courage. She is a true inspiration; and this video was the boost I needed to get serious with my own doctors. It tooks years to establish that I have an auto-immune disease...now to get the answers. Tell Joanna thank you for the kick in the butt I sorely needed.

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    1. Thanks Kit. She is pretty inspirational. The day she was born the doctors were all tiptoeing around us because they didn't have a clue what was wrong with her. I took one look at her eyes and told them all to quit worrying, she was going to be okay. She's a fighter. She has proved me right.

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  2. To paraphrase a quote I often embrace: Adversity introduces a person to him or herself--and Joanna obviously has taken her adversity and channeled into something positive and inspiring. A special person, I'm sure, Livia.

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    1. Thank you Tom. She is a very special person. I struggle to be better because of her example.

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  3. What a beautiful and brave young lady, I know your so very proud of her Livia. She shows such heart and spirit to have dealt with her issues, I see a fighter and a leader in her cause to bring attention to this disease! Blessings to you all~

    Belinda Joyner

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    1. Thank you Belinda, we are very proud of her. I knew she was a fighter the minute I laid eyes on her, but I didn't have a clue what she would be capable of. She inspires us all.

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