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How a Country Music Star Helped My Mother Raise Awareness for Microcephaly

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You may have heard of microcephaly in the news lately. The World Health Organization has linked the Zika virus to microcephaly, as well as Guillain-Barre syndrome.

Microcephaly is when a baby is born with a smaller-than-average head. Microcephaly can range from mild to severe, and it affects each person differently. My daughter has microcephaly. She is amazing, witty, and does not have a disastrous life. She is an extremely happy little girl who lights up a room, and everyone she meets is a friend.  I don’t know why she has microcephaly for sure, but most likely it is due to her other genetic diagnoses.

Riley’s daughter.

There seems to be a certain hysteria around microcephaly because of the Zika virus. There have been very nasty and hurtful comments about it on social media. It hurts my heart as a parent to read comments calling children like my daughter a “monster” or saying they have a “shrunken head.”

In 2008, a young man with microcephaly named Robin Freeman wanted to start an awareness day for his condition. He and his sister Carrie-Ann chose September 30 of every year, as well as the color yellow. The following year, a U.S. charity asked if they could join in and raise awareness in his honor. Since then it has become a worldwide event, and it grows bigger each year. This year the microcephaly community as a whole really pulled off some awesome awareness! Texas was the first state in the U.S. to make Microcephaly Day official! Our community was asked to wear yellow and post a #microselfie to social media.

My mother with Teddy Gentry from the band Alabama
Riley’s mother taking a selfie with Teddy Gentry from the band Alabama.

My mother, who at the time was going through treatment for a very rare cancer, took a #microselfie with her friend Mr. Teddy Gentry of the Hall of Fame country music band Alabama. She was passionate about raising awareness, even as she was fighting her own difficult battle. All of her sweet friends also participated. That selfie was amazing, and it was one of her favorite photos despite her not having her beautiful long blonde hair. My mom passed away last month unexpectedly. In her office, there was a rolled up poster board that they had made for Microcephaly Awareness Day.

You never know how a simple post or photo can impact the world. So whatever diagnosis or diagnoses you are raising awareness for, keep going! You can change the world. I know my mom did, and I’m so thankful.

Thank you Mr. Gentry, from all of the rare disease and microcephaly community.

Jayne Freeman contributed to this article as well. She is an amazing mother and advocate for microcephaly around the world.

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Originally published: March 24, 2016
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