We have recently received the official diagnosis of Aicardi Syndrome. We have suspected this for a couple months so it came as no surprise. We joined the Aicardi website and forum for families and plan on supporting the foundation. They provide a yearly conference for families to meet and learn more about Aicardi. They provide hotel rooms and food for all families who attend the conference. The donations they receive provide the funds to do so. Many families would not be able to attend without this assistance.
With that being said, we would like to help raise money for the foundation and for Piper. Justin and I, her grandparents and friends will be running the Knoxville Covenant Health half marathon for team Piper. The race is on April 1, which ironically is the same day we were told there was an abnormality in her brain last year. It will be an emotional day for us. We want to raise awareness for Aicardi syndrome because it is so rare, with only 800 reported cases in the U.S. We would like to donate half of the money to the foundation so they can continue to unite and provide support for families. The other half will go to medical expenses for Piper. As Justin likes to say, we are putting many doctors' children through college.
If you are already running and would like to purchase a Team Piper tee shirt let me know. We are so blessed to have such supportive friends and family! We can't wait to see you in Knoxville. Look for me, I will be the one crawling over the finish line.
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