TARS Awareness Texas' Mission and New Children's Book - The Bend Magazine

TARS Awareness Texas’ Mission and New Children’s Book

A Coastal Bend mother, founder of TARS Awareness Texas, writes a children’s book series to spread awareness about a rare genetic condition

Marla Hamann and her daughter Emma pose with their new book, Emma Goes to the Circus.

Photography by Shoocha Photography

Marla Hamann is the proud mother of three children. However, she couldn’t have imagined the motherhood journey she’s endured — one that has brought endless joy, as well as its fair share of adversities. Her youngest, Emma Layne, was born with the rare condition Thrombocytopenia Absent Radius Syndrome (TARS).

TARS is characterized by the absence of a bone called the radius in each forearm and a deficiency of blood cells involved in the blood clotting process. Webbed or fused fingers, a curved pinky finger or skeletal irregularities in the upper arms, legs and hip sockets can result in a TARS diagnosis.

According to the National Institutes of Health, TARS is only found in about 0.42 cases per 100,000 live births. After learning that Emma would be born with TARS, Marla went into research mode, but because it is so rare, she found little to no information about TARS and virtually no community support groups. The Hamanns were forced to live with Emma’s unknown condition until they found the right doctors to help. This opened up a whole new world for the family; they were able to get answers and access to other families dealing with similar challenges. Hamann then vowed to make sure no other family would feel devoid of resources to help prepare themselves for a child with TARS; thus, the birth of TARS Awareness Texas.

The organization educates families about the rare condition while supporting a mission rooted in prevention of bullying. “We want to build awareness,” Hamann said. “Just because [people] may look different doesn’t mean they can’t do things that everyone else can.”

The women of TARS Awareness Texas in Corpus Christi, Texas.
The organization hosts an annual walk honoring National TARS Awareness Month. This year, the walk takes place on Saturday, Apr. 6 in Cole Park. | Photo by Shoocha Photography

To provide further education and awareness, the mother/daughter duo started a children’s book series they hope to get into local schools, hospitals and clinics. The first book in the series, Emma Goes to the Circus, follows a little girl with TARS who wants to do what everyone else can do. After seeing the acrobats fly, she too wants to do it and continues to try until she flies just like them. The second book in the series, Emma Goes to Church, will be available soon and will communicate similar themes and principles.

“For change and acceptance to happen, it starts in the home,” Hamann explained. As the organization continues to grow, TARS Awareness Texas hopes to help other families with medical expenses and other costs associated with medical care like lodging, food and gas when life-saving treatment requires travel.

Through the ongoing book series and by providing enlightening information about the condition, TARS Awareness Texas hopes to foster community partnerships to create more opportunities to help more families. “As we grow,” Hamann affirmed, “we want to give back.”

Learn more about local nonprofits in the Coastal Bend! Read how the Corpus Christi Literacy Council is combating illiteracy.