Zebras Do Exist

Throughout my journey, God has blessed us with some incredible people! Mom and I have shared many of their stories with you, but we have yet to share one of the most important stories! It is the story of one of the first people God used to help put us on the path to a correct diagnosis!

On November 4th when we were still searching for a diagnosis, I had a terrible appointment where I was basically told that I was faking everything. We were very discouraged and did not know where to go from there. Later that day, my mom received a call from a woman named Lori Napier. Our friend, Ms. Debbie, had told her to call my mom because her children (Sami and Nick) had been through a lot medically over the past few years. As Lori was explaining their journey thus far, she asked my mom if she had ever heard of Ehlers-Danlos. She was shocked when my mom said, “Yes, I was just reading about it online, because Mackenzie has a lot of the symptoms!” As they continued to talk, they realized how similar I was to Sami and Nick!

We now know that we have all of the same conditions, except for a few differences! Nick went 7 years undiagnosed and Sami went 5 years! They have irreversible damage on their brainstems! I am SO blessed to have found a diagnosis so soon! My journey is much shorter than most people’s BECAUSE Lori had the courage to share the story of their difficult journey! They have been so helpful and I will be forever grateful!

To learn more about Sami and Nick visit:http://www.caringbridge.org/visit/samanthanapier.

Throughout my experiences with Ehlers-Danlos, I have found that it is NOT as rare as the statistics say it is! It is commonly misdiagnosed as Fibromyalgia, Lupus, MS, and other autoimmune disease, because most people are not aware of EDS! I feel like God is leading me to use my experiences and the experiences of my fellow EDSers to spread awareness about our conditions! It is very important for me to help people learn more about EDS and related conditions and to help others who have been diagnosed! If it weren’t for Lori calling my mom that day, who knows how long I would’ve gone without a diagnosis!

I have an opportunity to help the Napier’s and spread awareness about EDS, and I would like your help as well! They are having the Second Annual Zebras Do Exist 5K Run/Walk to raise money for their medical bills! Sami and Nick have both had the tethered cord release surgery, craniocervical fusion/decompression surgeries, and several other expensive medical procedures and appointments! Insurance did not cover all of the surgery costs or any of the travel expenses! In an effort to meet their financial needs, there are many opportunities for you to help!

Ways to help:

If you or someone you know would like to participate in the run, please register online at:
http://www.active.com/page/Event_Details.htm?event_id=1651514&assetId=4c391b88-9e13-44c2-953e-c8ba48177d84.

If you do not want to participate or are unable to, donations are greatly appreciated! You may make them at:
http://www.active.com/donate/zebrasdoexist.

If your company or any company you know would like to be a sponsor, please visit this link:
http://www.zebrasdoexist.com/2009%20zde%20sponsorship%20package.pdf.

You can always help by forwarding this information to friends and family! Please keep the word going so we can have as many people involved as possible!

To learn more about the run visit: http://www.zebrasdoexist.com/.

Thank you in advanced for your help! It is appreciated more than I can ever express in words!

Love,
Mackenzie