This evening I bought two tickets to the Philadelphia Phillies baseball game. They will be hosting the San Diego Padres on August 29. I recently visited Philadelphia, and on the way back to the airport, we drove by the sports arenas. I saw where the baseball games are played. I can imagine the excitement, the cheering and chanting of the crowd, the crack of a bat against a fast moving baseball.
I won’t be there to experience any of it, however. I purchased the tickets for another reason: August 29 is Anencephaly Awareness night at the ballpark. Part of the proceeds from the sale of each ticket, purchased through a special website, goes to Duke University Medical Center’s NTD Research Fund. And if 500 tickets are bought, through the website HERE, a pre-game video will be played, to raise awareness for anencephaly.
I do this for Shane Michael Haley, and his amazing parents, Jenna and Dan. I followed their incredible journey last year. They discovered during their pregnancy that their baby boy, Shane, had a rare disorder. Anencephaly is a neural tube defect in which the tube fails to close, resulting in the absence of a major portion of the brain, the skull and scalp. Babies who survive birth generally live a few hours. There is no cure for anencephaly.
The news was devastating to Shane’s parents. However, they chose to continue the pregnancy and share life with Shane while he was in the womb. Dan and Jenna created “Shane’s Bucket List” and during the remainder of the pregnancy, they shared beautiful experiences with their son, crossing each item off the bucket list as they accomplished it. Shane was born on October 9, 2014, and lived for four hours, held, cherished and loved by his family for his whole life.
I was deeply touched by Shane’s story, and by the love and courage of his parents. I continue to check in on their Facebook page periodically, and was thrilled recently to find an opportunity to contribute toward research to understand and prevent anencephaly. I was happy to purchase tickets for the game, and donate them to someone in Philadelphia who can attend. Jenna and Dan have done so much to raise awareness for this disorder by sharing their soulful journey. I applaud them and surround them with hope, peace and love. As they have said, many times, “There is no footprint too small that it cannot leave an imprint on this world.” Shane Michael’s imprint has been huge and continues to impact others.
We can all do something, in some way, for others. This is something I can do…buy tickets, cheer the Phillies on, vicariously, allowing others to sit in the seats I reserved. And raise awareness for Shane and anencephaly.