Friday, March 12, 2010

Close to My Heart

Today's Kelly Korner topic is: Favorite Charities.  While LOTS pop to mind, I decided to feature one today that is close to my heart, and that I don't think many people know about... Hunter's Hope Memorial.

This is Hunter.  Hunter was my sister's first friend when she switched schools in 4th grade.  They quickly became "attached at the hip," and my family had the priviledge of knowing Hunter for the next twelve years as she grew into an adorable and inspirational young woman.  When I think of Hunter, the first word that comes to my mind is JOY! Despite all the difficult circumstances surrounding her short life, Hunter was never short on smiles and love. 
Hunter with her family - the perfect picture of her spirit!

Hunter was diagnosed with a very rare genetic disoder called Niemann-Pick Type C disease when she was 18 months old.   This condition prevents the body from metabolizing cholesterol properly, and in turn, it builds up in the vital organs.  According to her website, symptoms include difficulty with vertical eye movement, clumsiness, slurred speech, learning difficulties and progressive intellectual decline, sudden loss of muscle tone and falls, tremors and seizures.  Although I regret that I didn't get to spend much time with Hunter when she was older, I will always be thankful to her for the role she played in Kathryn's life.  While their friendship looked different than many, Hunter was always a true picture of faith, hope, and perserverance for my sister.  In fact, on the year anniversary of her death, Kathryn had the word perservere, which was Hunter's motto,tattooed on her neck.  Hunter has forever left a mark on my family, just as she did so many other people. 
 
The foundation, Hunter's Hope was established in 1996 to help raise awareness about this disease and raise money to find a cure.  Today, it tells her beautiful story and is a perfect tribute to a life well-lived. I urge you to go check it out.
Hunter speaking at one of her fundraiser tea parties.
*All photos are from the Hunter's Hope website.
 
For more information about Niemann-Pick, visit the National Neimann-Pick Disease Foundation at http://www.nnpdf.org/ or contact me!

5 comments:

  1. :-) I love you. Thanks for explaining NP and Hunter to everyone! :)

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  2. What a beautiful post, a sweet dedication to Hunter and so informative for us to read. Thanks for sharing.

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  3. Oh how touching! Thanks so much for bringing awarness to this worthy cause.

    Hunter sounded so special!

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  4. What a beautiful story, thank you for sharing and opening our eyes to this disease.

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  5. My stepson has NPC. Thank you for sharing your story and bring awarness to the disease.

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Your comments are what makes this thing fun! I LOVE to hear from you and do my best to respond to everyone! THANK YOU!


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