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Meet Tenley: 2018 Family Advocacy Day Champion

Tenley is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Tenley will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

Tenley loves to smile, dance and clap. You might never know that this happy 2-year-old has had two open heart surgeries in the first four months of her life. When her mom was just 20 weeks pregnant, Tenley was diagnosed with hypoplastic left heart syndrome, a birth defect that affects blood flow through the heart.

Before her second surgery, Tenley went into cardiac arrest and was put on cardiac and respiratory support. Her parents worried that her conditions may not improve. But the staff at Texas Children’s Hospital did not give up on Tenley.

“One word that describes Tenley perfectly is ‘strength’. The strength she showed throughout her journey was remarkable,” her parents lovingly note. Tenley persevered with a smile on her face.

Tenley loves to spend time with one of Texas Children’s music therapists, Marial. During one of Tenley’s hardest days, Marial wrote an original song to the beat of Tenley’s heart as a keepsake for the family during the emotional rollercoaster ride.

Tenley underwent a successful heart transplant at Texas Children’s on May 10, 2017 and is now a healthy and happy 2-year-old! She is cared for by a group of pediatric subspecialists and living happily at home in Louisiana. Her family is elated to have her back home where she belongs.

Join us in welcoming Tenley to 2018 Family Advocacy Day!


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